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Okuhara T, Furukawa E, Okada H, Yokota R, Kiuchi T. Readability of written information for patients across 30 years: A systematic review of systematic reviews. PATIENT EDUCATION AND COUNSELING 2025; 135:108656. [PMID: 40068244 DOI: 10.1016/j.pec.2025.108656] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/11/2024] [Revised: 11/28/2024] [Accepted: 01/09/2025] [Indexed: 04/07/2025]
Abstract
OBJECTIVE This study conducted a systematic review of the systematic reviews of readability assessment studies to contribute to future readability research and practice by providing a comprehensive overview of information readability for patients. METHODS We searched multiple databases. We included systematic reviews of studies that quantitatively assessed the readability of health information. RESULTS This study included 24 systematic reviews, which assessed the readability of 29,424 materials across 438 studies from 1990 to 2022. All systematic reviews reported that the readability of most materials exceeded the recommended sixth to eight-grade reading level. The readability level did not improve between 2001 and 2022, when the included systematic reviews were published. CONCLUSIONS We found that the required reading level of information was too high for patients in all clinical areas included in this systematic review. We also identified gaps in readability assessment research in clinical areas and across media types and languages, which should be addressed by future studies. PRACTICE IMPLICATIONS Health professionals should use available guidelines to make existing patient information easy to read and to write easy-to-read patient information, thereby improving readability. Such efforts are needed regardless of the organizations these professionals work at.
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Affiliation(s)
- Tsuyoshi Okuhara
- Department of Health Communication, School of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
| | - Emi Furukawa
- University Hospital Medical Information Network (UMIN) Center, The University of Tokyo Hospital, Japan
| | - Hiroko Okada
- Department of Health Communication, School of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Rie Yokota
- Department of Medical Communication, School of Pharmacy and Pharmaceutical Sciences, Hoshi University, Japan
| | - Takahiro Kiuchi
- Department of Health Communication, School of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
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Tobada SB, Chatelet V, Bechade C, Lanot A, Boyer A, Couchoud C, Toure F, Boime S, Lobbedez T, Beaumier M. Is social deprivation associated with peritoneal dialysis outcomes? A cohort study with REIN registry data. Perit Dial Int 2025; 45:174-184. [PMID: 38632672 DOI: 10.1177/08968608241237685] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/19/2024] Open
Abstract
BACKGROUND Social deprivation is associated with lower peritoneal dialysis (PD) uptake. This study was carried out to evaluate the role of social deprivation on the outcome of PD. METHODS This was a retrospective study of data extracted from the Renal Epidemiology and Information Network registry for patients older than 18 years who started PD in metropolitan France between 1 January 2017 and 30 June 2018. The end of the observation period was 31 December 2020. The exposure was the European Deprivation Index calculated using the patient's address. The events of interest were death, transfer to haemodialysis (HD), transplantation and the composite event of death or transfer to HD. A Cox model and Fine and Gray model were used for the analysis. RESULTS A total of 1581 patients were included, of whom 418 (26.5%) belonged to Quintile 5 of the European Deprivation Index (the most deprived patients). In the Cox model, the most deprived subjects did not have a greater risk of death (cause-specific hazard ratio (cs-HR): 0.76 [95% confidence interval (CI): 0.53-1.10], transfer to HD (cs-HR 1.37 [95% CI: 0.95-1.98]) or the composite event of death or transfer to HD (cs-HR: 1.08 [95% CI: 0.84-1.38]) or a lower risk of kidney transplantation (cs-HR: 0.73 [95% CI: 0.48-1.10]). In the competing risk analysis, the most deprived subjects had a higher risk of transfer to HD (subdistribution hazard ratio (sd-HR): 1.54 [95% CI: 1.08-2.19]) and lower access to kidney transplantation (sd-HR: 0.68 [0.46-0.99]). CONCLUSION In PD patients, social deprivation was not associated with death or the composite event of death or transfer to HD. Socially deprived individuals had a greater risk of transfer to HD and lower access to kidney transplantation in the competing risk analysis.
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Affiliation(s)
- Steve Biko Tobada
- Centre Universitaire des Maladies Rénales, CHU de Caen, Caen Cedex, France
| | - Valérie Chatelet
- Centre Universitaire des Maladies Rénales, CHU de Caen, Caen Cedex, France
- INSERM U1086 - ANTICIPE - Centre Régional de Lutte contre le Cancer, François Baclesse, Caen, France
- Normandie Université, Unicaen, UFR de médecine, Caen Cedex, France
| | - Clemence Bechade
- Centre Universitaire des Maladies Rénales, CHU de Caen, Caen Cedex, France
- INSERM U1086 - ANTICIPE - Centre Régional de Lutte contre le Cancer, François Baclesse, Caen, France
- Normandie Université, Unicaen, UFR de médecine, Caen Cedex, France
| | - Antoine Lanot
- Centre Universitaire des Maladies Rénales, CHU de Caen, Caen Cedex, France
- INSERM U1086 - ANTICIPE - Centre Régional de Lutte contre le Cancer, François Baclesse, Caen, France
- Normandie Université, Unicaen, UFR de médecine, Caen Cedex, France
| | - Annabel Boyer
- Centre Universitaire des Maladies Rénales, CHU de Caen, Caen Cedex, France
- INSERM U1086 - ANTICIPE - Centre Régional de Lutte contre le Cancer, François Baclesse, Caen, France
- Normandie Université, Unicaen, UFR de médecine, Caen Cedex, France
| | - Cécile Couchoud
- REIN Registry, Agence de la Biomédecine, Saint Denis La Plaine, France
| | - Fatouma Toure
- REIN Registry, Agence de la Biomédecine, Saint Denis La Plaine, France
- Service de Néphrologie, Dialyse et Transplantation, CHU de Limoges, Limousin, France
| | - Sabrina Boime
- REIN Registry, Agence de la Biomédecine, Saint Denis La Plaine, France
- Grand Est, Observatoire Régional de Santé (ORS), Alsace, France
| | - Thierry Lobbedez
- Centre Universitaire des Maladies Rénales, CHU de Caen, Caen Cedex, France
- INSERM U1086 - ANTICIPE - Centre Régional de Lutte contre le Cancer, François Baclesse, Caen, France
- Normandie Université, Unicaen, UFR de médecine, Caen Cedex, France
| | - Mathilde Beaumier
- Néphrologie, Centre Hospitalier Public du Cotentin, Cherbourg-en-Cotentin, Basse-Normandie, France
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Winterbottom A, Mooney A, Russon L, Hipkiss V, Ziegler L, Finderup J, Williams R, Bekker HL. Integrating Clinical Reasoning Into a Patient Decision Aid for People Making Conservative Kidney Management and Dialysis Decisions: A User-Centered Intervention Development Design. Kidney Med 2025; 7:100984. [PMID: 40256209 PMCID: PMC12008628 DOI: 10.1016/j.xkme.2025.100984] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/22/2025] Open
Abstract
Rationale & Objective For older adults with kidney failure, conservative kidney management can provide better quality of life, less treatment burden, and for some, the same length of life benefit. Patient decision making around kidney treatments is complex and emotionally demanding for both patients and health professionals. Resources provided by kidney units about dialysis and conservative kidney management options are frequently not sufficient to support people making reasoned decisions between options. This article describes 2 studies underpinning the development of the Yorkshire Dialysis and Conservative Care Decision Aid. Study Design Study 1: cross-sectional study using in-depth interview methods; study 2: user-centered iterative design with multiple stakeholders. Setting & Participants Older adults with kidney failure and health professionals from 3 kidney units in the North of England. Resource development included input from co-applicants, patient and public involvement team, multidisciplinary health professionals, and academics in the United Kingdom and Denmark. Analytical Approach Thematic analysis was used to analyze the data. Results Three themes synthesized stakeholder responses: transition to a conservative kidney management pathway, clinical and social indicators for changing kidney care management, and preparation for end-of-life care. The findings informed the patient decision aid content, which was structured with reference to international guidance. There were 16 iterations of the patient decision aid addressing multiple-stakeholder evaluations. People with kidney failure, family members, and kidney professionals agreed the final resource provides accurate, balanced, accessible, and relevant information supporting engagement with the decision between conservative kidney management care and dialysis within the kidney care pathway in the context of their everyday life. Limitations There was a lack of ethnic diversity in the sample. Conclusions People with kidney failure must choose between dialysis and conservative kidney management when planning their kidney care. Development of this resource used evidence of professionals' clinical reasoning about kidney disease management. Providing details of the research underpinning patient decision aid development demonstrates why the resource can enhance health literacy and supports shared decision making conversations with people making these difficult decisions.
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Affiliation(s)
- Anna Winterbottom
- Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, United Kingdom
- Adult Renal Services, St James University Hospital, Leeds, United Kingdom
| | - Andrew Mooney
- Adult Renal Services, St James University Hospital, Leeds, United Kingdom
| | - Lynne Russon
- Adult Renal Services, St James University Hospital, Leeds, United Kingdom
| | - Vicki Hipkiss
- Renal Unit, St Luke's Hospital, Bradford, West Yorkshire, United Kingdom
| | - Lucy Ziegler
- Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, United Kingdom
| | - Jeanette Finderup
- Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark
| | | | - Hilary L. Bekker
- Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, United Kingdom
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Acker SN, Meraz AI, Wilson SN, Mata C, Izere MF, Cooper E, Fingland S, Simmons H, Van Etten E, Diaz-Miron J, Kaar JL. A Randomized Controlled Trial of Perioperative Education Via E-health Technology to Ensure High Quality Equitable Care: One-4-ALL Initiative. J Pediatr Surg 2025; 60:162235. [PMID: 39954320 DOI: 10.1016/j.jpedsurg.2025.162235] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/26/2024] [Revised: 01/22/2025] [Accepted: 01/29/2025] [Indexed: 02/17/2025]
Abstract
BACKGROUND Our current system of perioperative education offers variable amounts of information to families, contributing to inequitable care. We hypothesized implementing web-based perioperative education for gastrostomy tube (GT) surgery would be feasible without causing patient harm. METHODS We conducted a randomized controlled trial comparing e-health education to standard education for families of children undergoing GT placement at our center between 6/2023-4/2024. Patients randomized to e-health were assigned preparatory pathways at three times: prior to surgery, prior to hospital discharge, and prior to outpatient follow up. The standard education group received standard perioperative education prior to hospital discharge and at clinic follow up. All participants were asked to complete study surveys at the three timepoints. Clinical outcomes data were collected to assess potential patient harm. RESULTS We enrolled 62 families: 30 randomized to e-health and 32 to standard education. Demographic factors were similar between groups. Eighty-seven percent of e-health families created an account and viewed the web-based content. Both groups reported high readiness for surgery with 89 % or more reporting GT surgery will benefit my child's health and they were comfortable deciding to elect for GT surgery. The rate of common clinical complications did not differ between groups. CONCLUSIONS An e-health platform to provide perioperative education to families of patients undergoing GT surgery is feasible without negatively impacting patient outcomes. This approach has the potential to improve on our current standard by offering education in a family's preferred language, their own pace, and their own schedule. LEVEL OF EVIDENCE Level II - randomized controlled trial.
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Affiliation(s)
- Shannon N Acker
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA; Department of Surgery, Division of Pediatric Surgery, University of Colorado School of Medicine, Aurora, CO, USA.
| | - Ana Ibarra Meraz
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA
| | - Samantha N Wilson
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA
| | - Claudia Mata
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA
| | - Marie-France Izere
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA
| | - Emily Cooper
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA
| | - Stephanie Fingland
- Department of Surgery, Division of Pediatric Surgery, University of Colorado School of Medicine, Aurora, CO, USA
| | - Hope Simmons
- Department of Surgery, Division of Pediatric Surgery, University of Colorado School of Medicine, Aurora, CO, USA
| | - Elise Van Etten
- Department of Surgery, Division of Pediatric Surgery, University of Colorado School of Medicine, Aurora, CO, USA
| | - Jose Diaz-Miron
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA; Department of Surgery, Division of Pediatric Surgery, University of Colorado School of Medicine, Aurora, CO, USA
| | - Jill L Kaar
- Research Outcomes in Children's Surgery, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, CO, USA; Department of Surgery, Division of Pediatric Surgery, University of Colorado School of Medicine, Aurora, CO, USA
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Kennard A, Rainsford S, Hamilton K, Glasgow N, Pumpa K, Douglas A, Talaulikar G. Subjective and objectives measures of frailty among adults with advanced chronic kidney disease: a cross-sectional analysis of clinician misclassification. Intern Med J 2025; 55:599-607. [PMID: 39777953 PMCID: PMC11981026 DOI: 10.1111/imj.16630] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/12/2024] [Accepted: 12/09/2024] [Indexed: 01/11/2025]
Abstract
BACKGROUND Frailty is a recognisable clinical measure of impaired physiological reserve and vulnerability to adverse outcomes that is validated among patients with kidney disease. Practice patterns reveal inconsistent use of objective frailty measures by nephrologists, with clinicians prioritising subjective clinical impressions, possibly risking misclassification and discrimination. AIMS The aim of this study was to examine correlations between subjective and objective measures of frailty in a cohort of patients attending routine nephrologist review. METHODS Eighty-nine participants attending scheduled review with their primary treating nephrologist (n = 6) were included in cross-sectional analysis. Measured frailty based on Fried phenotype and subjective clinician impression were assessed for congruence using Pearson's correlation analysis and ĸ statistic. Ordinal logistic regression examined patient demographics associated with perceived frailty. Misclassification was explored using descriptive statistics and contingency table analysis. RESULTS Frailty and prefrailty were prevalent by both objective and subjective means of assessment with minimal correlation between clinician impression and measured Fried phenotype (r = 0.50, P = 0.00, ĸ = 0.25, P =& 0.00). Subjective clinician impression misclassified half of participants, influenced by surrogate frailty measures including female sex, comorbidity and reliance on a walking aid. Clinicians were equally likely to over-classify prefrailty as to under-recognise established frailty, with no evidence of systemic misclassification bias. Subjective clinican impression of frailty had a positive predictive value of 19.1% and a negative predictive value of 56.2%. CONCLUSIONS Nephrologists' reliance on subjective clinical impressions that overlook or misclassify prefrailty offers incomplete prognostic assessment and potentially misses opportunities for early intervention.
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Affiliation(s)
- Alice Kennard
- College of Health and MedicineAustralian National UniversityCanberraAustralian Capital TerritoryAustralia
- Department of Renal MedicineCanberra Health ServicesCanberraAustralian Capital TerritoryAustralia
| | - Suzanne Rainsford
- College of Health and MedicineAustralian National UniversityCanberraAustralian Capital TerritoryAustralia
| | - Kelly Hamilton
- Department of Renal MedicineCanberra Health ServicesCanberraAustralian Capital TerritoryAustralia
| | - Nicholas Glasgow
- College of Health and MedicineAustralian National UniversityCanberraAustralian Capital TerritoryAustralia
| | - Kate Pumpa
- School of Public Health, Physiotherapy and Sports ScienceUniversity College DublinDublinIreland
- Discipline of Sport and Exercise Science, Faculty of HealthUniversity of CanberraCanberraAustralian Capital TerritoryAustralia
| | - Angela Douglas
- Discipline of Sport and Exercise Science, Faculty of HealthUniversity of CanberraCanberraAustralian Capital TerritoryAustralia
| | - Girish Talaulikar
- College of Health and MedicineAustralian National UniversityCanberraAustralian Capital TerritoryAustralia
- Department of Renal MedicineCanberra Health ServicesCanberraAustralian Capital TerritoryAustralia
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Spina AC, Fereydouni P, Tang JN, Andalib S, Picton BG, Fox AR. Tailoring glaucoma education using large language models: Addressing health disparities in patient comprehension. Medicine (Baltimore) 2025; 104:e41059. [PMID: 39792725 PMCID: PMC11729625 DOI: 10.1097/md.0000000000041059] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/23/2024] [Accepted: 12/05/2024] [Indexed: 01/12/2025] Open
Abstract
This study evaluates the efficacy of GPT-4, a Large Language Model, in simplifying medical literature for enhancing patient comprehension in glaucoma care. GPT-4 was used to transform published abstracts from 3 glaucoma journals (n = 62) and patient education materials (Patient Educational Model [PEMs], n = 9) to a 5th-grade reading level. GPT-4 was also prompted to generate de novo educational outputs at 6 different education levels (5th Grade, 8th Grade, High School, Associate's, Bachelor's and Doctorate). Readability of both transformed and de novo materials was quantified using Flesch Kincaid Grade Level (FKGL) and Flesch Reading Ease (FKRE) Score. Latent semantic analysis (LSA) using cosine similarity was applied to assess content consistency in transformed materials. The transformation of abstracts resulted in FKGL decreasing by an average of 3.21 points (30%, P < .001) and FKRE increasing by 28.6 points (66%, P < .001). For PEMs, FKGL decreased by 2.38 points (28%, P = .0272) and FKRE increased by 12.14 points (19%, P = .0459). LSA revealed high semantic consistency, with an average cosine similarity of 0.861 across all abstracts and 0.937 for PEMs, signifying topical themes were quantitatively shown to be consistent. This study shows that GPT-4 effectively simplifies medical information about glaucoma, making it more accessible while maintaining textual content. The improved readability scores for both transformed materials and GPT-4 generated content demonstrate its usefulness in patient education across different educational levels.
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Affiliation(s)
- Aidin C. Spina
- School of Medicine, University of California, Irvine, Irvine, CA
| | | | - Jordan N. Tang
- School of Medicine, University of California, Irvine, Irvine, CA
| | - Saman Andalib
- School of Medicine, University of California, Irvine, Irvine, CA
| | - Bryce G. Picton
- School of Medicine, University of California, Irvine, Irvine, CA
| | - Austin R. Fox
- School of Medicine, University of California, Irvine, Irvine, CA
- School of Medicine, Gavin Herbert Eye Institute at University of California, Irvine, Irvine, CA
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Ghahremani JS, Chapek M, Xie V, Watarastaporn T, Al-Khatib NA, Navarro RA. Both English- and Spanish-Language Anterior Cruciate Ligament Reconstruction Online Patient Education Materials Are Written at Higher-Than-Recommended Reading Levels. Arthrosc Sports Med Rehabil 2024; 6:100982. [PMID: 39776507 PMCID: PMC11701936 DOI: 10.1016/j.asmr.2024.100982] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/06/2024] [Accepted: 07/13/2024] [Indexed: 01/11/2025] Open
Abstract
Purpose To examine the overall reading levels of anterior cruciate ligament reconstruction online patient education materials (OPEMs) written in English and Spanish. Methods We conducted Google searches for OPEMs using "ACL surgery" and "cirugía LCA" as English and Spanish search terms, respectively. Several measures of readability were used to analyze 25 English-language OPEMs (Flesch Reading Ease, Flesch Reading Ease Grade Level, Flesch-Kincaid Grade Level, Coleman-Liau Index, Gunning Fog Index, and Simple Measure of Gobbledygook) and 25 Spanish-language OPEMs (Fernández-Huerta Index, Fernández-Huerta Grade Level, and Índice de Legibilidad de Flesch-Szigriszt). English- and Spanish-language OPEMs were compared based on mean overall grade level and number of OPEMs written below a seventh- or ninth-grade reading level. Results English-language OPEMs showed a higher mean overall grade level than Spanish-language OPEMs (10.48 ± 1.86 vs 8.64 ± 1.22, P < .001). No significant differences were noted in the number of OPEMs written below a seventh-grade reading level. However, significantly more Spanish-language OPEMs were written below a ninth-grade reading level compared with English-language OPEMs (56% vs 16%, P = .003). Conclusions Although Spanish-language OPEMs were written at a lower reading level, average readability for both English- and Spanish-language OPEMs was significantly higher than the recommended level. Across both languages, only a single English-language webpage met the American Medical Association-recommended sixth-grade reading level. More Spanish-language articles were written at or below the average adult reading level in the United States. Clinical Relevance It is imperative that patient educational materials be written at a reading level that is understood by the most patients. This is especially true for OPEMs, when a medical provider is not present to answer questions. Therefore, it is important to evaluate the reading level of OPEMs to determine whether they are written at an appropriate level for the best patient understanding.
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Affiliation(s)
- Jacob S. Ghahremani
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California, U.S.A
| | - Michael Chapek
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California, U.S.A
| | - Virginia Xie
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California, U.S.A
| | - Tanya Watarastaporn
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California, U.S.A
| | - Nala A. Al-Khatib
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California, U.S.A
| | - Ronald A. Navarro
- Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California, U.S.A
- Department of Orthopaedic Surgery, Kaiser Permanente Southern California Permanente Medical Group, Pasadena, California, U.S.A
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Willburger B, Chen Z, Mansfield KJ. Investigation of the quality and health literacy demand of online information on pelvic floor exercises to reduce stress urinary incontinence. Aust N Z J Obstet Gynaecol 2024; 64:542-547. [PMID: 38686657 PMCID: PMC11683755 DOI: 10.1111/ajo.13830] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/02/2023] [Accepted: 04/16/2024] [Indexed: 05/02/2024]
Abstract
BACKGROUND Many women are embarrassed to discuss pelvic floor exercises with health professionals during pregnancy; instead they search the internet for information on pelvic floor exercises. AIMS This project investigated the quality and health literacy demand in terms of readability, understandability and actionability of information available on the internet relating to pelvic floor exercises. MATERIALS AND METHODS An analysis was conducted on 150 websites and 43 videos obtained from three consecutive Google searches relating to pelvic floor exercises. Websites were assessed for Health on the Net certification. Readability was assessed using a readability calculator, and understandability/actionability of website and video information was assessed using the Patient Education Materials Assessment Tool (PEMAT) for Print or Audiovisual Materials. RESULTS Less than one-third (24%) of the websites were certified for quality. The median readability score for the websites was grade 9 and the websites and videos both rated highly for understandability and actionability. The median understandability score for the website information was 87%, and the median actionability score was 71%. The median understandability score of the video information was 95.5% and the median actionability score was 100%. The understandability and actionability of video information was also significantly greater than that for website information (P < 0.01). CONCLUSION Clinicians could consider directing patients to video-based resources when advising online pelvic floor exercise resources for women during pregnancy, especially those with lower health literacy.
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Affiliation(s)
- Brydie Willburger
- Graduate School of MedicineUniversity of WollongongWollongongNew South WalesAustralia
- Illawarra Shoalhaven Local Health DistrictWollongongNew South WalesAustralia
| | - Zhuoran Chen
- St George HospitalUniversity of New South WalesSydneyNew South WalesAustralia
| | - Kylie J. Mansfield
- Graduate School of MedicineUniversity of WollongongWollongongNew South WalesAustralia
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Sharma M, Tsai CL, Li YC, Lee CC, Hsieh YL, Chang CH, Chen SW, Chang LB. Utilizing Raman spectroscopy for urinalysis to diagnose acute kidney injury stages in cardiac surgery patients. Ren Fail 2024; 46:2375741. [PMID: 38994782 PMCID: PMC11249162 DOI: 10.1080/0886022x.2024.2375741] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/02/2024] [Accepted: 06/29/2024] [Indexed: 07/13/2024] Open
Abstract
BACKGROUND The successful treatment and improvement of acute kidney injury (AKI) depend on early-stage diagnosis. However, no study has differentiated between the three stages of AKI and non-AKI patients following heart surgery. This study will fill this gap in the literature and help to improve kidney disease management in the future. METHODS In this study, we applied Raman spectroscopy (RS) to uncover unique urine biomarkers distinguishing heart surgery patients with and without AKI. Given the amplified risk of renal complications post-cardiac surgery, this approach is of paramount importance. Further, we employed the partial least squares-support vector machine (PLS-SVM) model to distinguish between all three stages of AKI and non-AKI patients. RESULTS We noted significant metabolic disparities among the groups. Each AKI stage presented a distinct metabolic profile: stage 1 had elevated uric acid and reduced creatinine levels; stage 2 demonstrated increased tryptophan and nitrogenous compounds with diminished uric acid; stage 3 displayed the highest neopterin and the lowest creatinine levels. We utilized the PLS-SVM model for discriminant analysis, achieving over 90% identification rate in distinguishing AKI patients, encompassing all stages, from non-AKI subjects. CONCLUSIONS This study characterizes the incidence and risk factors for AKI after cardiac surgery. The unique spectral information garnered from this study can also pave the way for developing an in vivo RS method to detect and monitor AKI effectively.
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Affiliation(s)
- Mukta Sharma
- Graduate Institute, Prospective Technology of Electrical Engineering and Computer Science, National Chin-Yi University of Technology, Taiwan
| | - Chia-Lung Tsai
- Department of Electronic Engineering, Chang Gung University, Taoyuan, Taiwan
- Department of Otolaryngology-Head and Neck Surgery, Chang Gung Memorial Hospital, Taoyuan, Taiwan
- Department of Electronic Engineering, Ming Chi University of Technology, New Taipei City, Taiwan
| | - Ying-Chang Li
- Graduate Institute, Prospective Technology of Electrical Engineering and Computer Science, National Chin-Yi University of Technology, Taiwan
| | - Cheng-Chia Lee
- Department of Nephrology, Kidney Research Center, Chang Gung Memorial Hospital, Taoyuan, Taiwan
- Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taoyuan, Taiwan
| | - Yu-Li Hsieh
- Department of Electrical and Electronic Engineering, Chung Cheng Institute of Technology, National Defense University, Taoyuan, Taiwan
| | - Chih-Hsiang Chang
- Department of Nephrology, Kidney Research Center, Chang Gung Memorial Hospital, Taoyuan, Taiwan
- Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taoyuan, Taiwan
| | - Shao-Wei Chen
- Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taoyuan, Taiwan
- Department of Cardiothoracic and Vascular Surgery, Chang Gung Memorial Hospital, Taoyuan, Taiwan
| | - Liann-Be Chang
- Department of Electronic Engineering, Chang Gung University, Taoyuan, Taiwan
- Green Technology Research Center, Chang Gung University, Taoyuan, Taiwan
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Bonner C, Taba M, Fajardo MA, Batcup C, Newell BR, Li AX, Mayfield HJ, Lau CL, Litt JCB. Using health literacy principles to improve understanding of evolving evidence in health emergencies: Optimisation and evaluation of a COVID-19 vaccination risk-benefit calculator. Vaccine 2024; 42:126296. [PMID: 39232400 DOI: 10.1016/j.vaccine.2024.126296] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/12/2024] [Revised: 08/27/2024] [Accepted: 08/27/2024] [Indexed: 09/06/2024]
Abstract
BACKGROUND Risk communication tools based on epidemiological models can help inform decision-making, but must be responsive to health literacy needs to be effective. To facilitate informed choice about risks and benefits of COVID-19 vaccination, an epidemiological model called the COVID-19 Risk Calculator (CoRiCal) tool was developed by a multi-disciplinary team. AIM This paper demonstrates how to use health literacy principles to improve consumer understanding of COVID-19 and vaccine effects, using a range of methods that could be applied to any health emergency. METHODS Stage 1: Health literacy optimisation and user testing to reduce improve understandability (n = 19). Stage 2: Experiments to explore the effect of risk communication formats on perceived understanding including probability, graphs, evaluative labels and comparison risks (n = 207). Stage 3: Randomised controlled trial (n = 2005) with 4 arms: 1) standard government information; 2) standard CoRiCal output based on bar graphs; 3) animation explaining bar graphs in "x per million" format; 4) animation explaining bar graphs in "1 in x chance" format. The primary outcome was knowledge about COVID-19 risk. RESULTS Stage 1 reduced the complexity of the text and graphs. Stage 2 showed that different risk communication formats change perceived understanding, with a preference for evaluative labels across 2 experiments and some indication people with lower health literacy had a greater preference for bar graphs. Stage 3 showed both animations increased knowledge compared to standard government information. There was no difference between the probability formats, or by health literacy level. DISCUSSION The results showed that simple explanations of complex epidemiological models improve knowledge about COVID-19 and vaccination. This demonstrates how health literacy design principles and short animations can be used to support informed decision making about health emergencies.
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Affiliation(s)
- Carissa Bonner
- Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine & Health, University of Sydney, NSW, Australia; Menzies Centre for Health Policy and Economics, Faculty of Medicine & Health, University of Sydney, NSW, Australia.
| | - Melody Taba
- Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine & Health, University of Sydney, NSW, Australia
| | - Michael Anthony Fajardo
- Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine & Health, University of Sydney, NSW, Australia
| | - Carys Batcup
- Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine & Health, University of Sydney, NSW, Australia
| | - Ben R Newell
- School of Psychology, Faculty of Science, UNSW, Sydney, Australia; Institute for Climate Risk and Response, UNSW, Sydney, Australia
| | - Amy X Li
- School of Psychology, Faculty of Science, UNSW, Sydney, Australia; Department of Experimental Psychology, University of Oxford, Oxford, UK
| | - Helen J Mayfield
- Centre for Clinical Research, Faculty of Medicine, The University of Queensland, Australia
| | - Colleen L Lau
- Centre for Clinical Research, Faculty of Medicine, The University of Queensland, Australia
| | - John C B Litt
- College of Medicine and Public Health, Finders University, Australia
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Kennard A, Richardson A, Rainsford S, Hamilton K, Glasgow N, Pumpa K, Douglas A, Talaulikar GS. Longitudinal frailty assessment in the prediction of survival among patients with advanced chronic kidney disease: a prospective observational single-centre cohort study. BMJ Open 2024; 14:e087189. [PMID: 39389597 PMCID: PMC11474908 DOI: 10.1136/bmjopen-2024-087189] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/05/2024] [Accepted: 08/30/2024] [Indexed: 10/12/2024] Open
Abstract
OBJECTIVES This study aims to describe the prevalence, characteristics and longitudinal changes in frailty among outpatient chronic kidney disease (CKD) and haemodialysis (HD) populations and their impact on survival. DESIGN Prospective observational cohort study. SETTING Single-centre ambulatory tertiary care setting, metropolitan Australian teaching hospital. PARTICIPANTS Adult patients with advanced CKD (defined as estimated glomerular filtration rate <20 mL/min) or undergoing maintenance HD. Consent model was informed opt-out consent. INTERVENTIONS Fried frailty assessment at baseline, 6 months and 12 months of longitudinal follow-up. PRIMARY OUTCOMES All-cause mortality and kidney transplantation events. RESULTS Frailty was identified in 36.3% of the 256 participants, while an additional 46.5% exhibited prefrailty. Frailty was equally common among CKD and HD cohorts. Frailty outperformed age, comorbidity and laboratory parameters in predicting mortality risk with HR 2.83 (95% CI 1.44 to 5.56, p<0.001). Frailty also substantially reduced access to transplantation. While most participants exhibited static Fried phenotype over longitudinal assessment, improvements in frailty were observed as frequently as frailty progression. Female gender and symptom burden predicted frailty progression. CONCLUSIONS Frailty is highly prevalent and closely aligned with survival outcomes. Frailty among patients attending routine outpatient care may demonstrate responsiveness to intervention with subsequent improvements in mortality and other patient-level outcomes.
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Affiliation(s)
- Alice Kennard
- College of Health and Medicine, Australian National University, Canberra, Australian Capital Territory, Australia
- Department of Renal Medicine, Canberra Hospital, Canberra, Australian Capital Territory, Australia
| | | | - Suzanne Rainsford
- College of Health and Medicine, Australian National University, Canberra, Australian Capital Territory, Australia
| | - Kelly Hamilton
- Department of Renal Medicine, Canberra Hospital, Canberra, Australian Capital Territory, Australia
| | - Nicholas Glasgow
- College of Health and Medicine, Australian National University, Canberra, Australian Capital Territory, Australia
| | - Kate Pumpa
- University College Dublin, Dublin, Ireland
- University of Canberra, Canberra, Canberra, Australia
| | | | - Girish Scricant Talaulikar
- College of Health and Medicine, Australian National University, Canberra, Australian Capital Territory, Australia
- Department of Renal Medicine, Canberra Hospital, Canberra, Australian Capital Territory, Australia
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12
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Thanabalasingam SJ, Akbari A, Sood MM, Brown PA, White CA, Moorman D, Salman M, Sriperumbuduri S, Hundemer GL. Social determinants of health and dialysis modality selection in patients with advanced chronic kidney disease: A retrospective cohort study. Perit Dial Int 2024; 44:245-253. [PMID: 38445493 DOI: 10.1177/08968608241234525] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 03/07/2024] Open
Abstract
BACKGROUND Social determinants of health are non-medical factors that impact health. For patients with chronic kidney disease (CKD) progressing to kidney failure, the influence of social determinants of health on dialysis modality selection (haemodialysis vs. peritoneal dialysis (PD)) is incompletely understood. METHODS Retrospective cohort study of 981 consecutive patients with advanced CKD referred to the Ottawa Hospital Multi-Care Kidney Clinic (Canada) who progressed to dialysis from 2010 to 2021. Multivariable logistic regression was used to measure odds ratios (OR) for the associations between social determinants of health (education, employment, marital status and residence) and modality of dialysis initiation. RESULTS The mean age and estimated glomerular filtration rate were 64 and 18 mL/min/1.73 m2, respectively. Not having a high school degree was associated with lower odds of initiating dialysis via PD compared to having a college degree (29% vs. 48%, OR 0.55 (95% confidence interval (CI) 0.34-0.88)). Unemployment was associated with lower odds of initiating dialysis via PD compared to active employment (38% vs. 62%, OR 0.40 (95% CI 0.27-0.60)). Being single was associated with lower odds of initiating dialysis via PD compared to being married (35% vs. 48%, adjusted OR 0.52 (95% CI 0.39-0.70)). Living alone at home was associated with lower odds of initiating dialysis via PD compared to living at home with family (33% vs. 47%, adjusted OR 0.55 (95% CI 0.39-0.78)). CONCLUSIONS Social determinants of health including education, employment, marital status and residence are associated with dialysis modality selection. Addressing these 'upstream' social factors may allow for more equitable outcomes during the transition from advanced CKD to kidney failure.
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Affiliation(s)
| | - Ayub Akbari
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, University of Ottawa, ON, Canada
| | - Manish M Sood
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, University of Ottawa, ON, Canada
| | - Pierre A Brown
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, University of Ottawa, ON, Canada
| | - Christine A White
- Division of Nephrology, Department of Medicine, Queen's University, Kingston, ON, Canada
| | - Danielle Moorman
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
| | - Maria Salman
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
| | - Sriram Sriperumbuduri
- Division of Nephrology, Department of Medicine, University of Mississippi Medical Center, Jackson, MS, USA
| | - Gregory L Hundemer
- Division of Nephrology, Department of Medicine, University of Ottawa, ON, Canada
- Clinical Epidemiology Program, Ottawa Hospital Research Institute, University of Ottawa, ON, Canada
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13
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Dawson J, Lambert K, Campbell KL, Kelly JT. Incorporating digital platforms into nutritional care in chronic kidney disease. Semin Dial 2024; 37:350-359. [PMID: 34235785 DOI: 10.1111/sdi.12998] [Citation(s) in RCA: 4] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/07/2021] [Accepted: 06/15/2021] [Indexed: 11/29/2022]
Abstract
Digital health is increasingly recognized for its value to enhance patient care and clinical care processes. People with chronic kidney disease often find dietary self-management challenging. There is promising evidence that digital health interventions can support people with chronic kidney disease to self-manage their diet, by providing more frequent access to nutritional information and dietitians and by facilitating regular monitoring and feedback. There is some emerging evidence of the impact of digital interventions in chronic kidney disease; however, more research is needed to provide meaningful interpretation of how digital interventions can enhance current practice. Importantly, a number of factors need to be considered when designing, developing, implementing, and evaluating the impact of digital interventions. Consideration of the nutrition service and patients' needs, motivation and digital literacy, type of digital intervention, and the ability to embed the digital intervention into current care processes are critical. This paper overviews the current literature on digital health and self-management, factors to consider when embedding digital interventions and platforms into nutrition care and practical considerations for designing and implementing digital health interventions to enhance the nutritional care of people with chronic kidney disease.
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Affiliation(s)
- Jessica Dawson
- Nutrition and Dietetics Department, St George Hospital, Sydney, New South Wales, Australia
| | - Kelly Lambert
- School of Medicine, Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, NSW, Australia
- Illawarra Health and Medical Research Institute, University of Wollongong, Wollongong, NSW, Australia
| | - Katrina L Campbell
- Healthcare Excellence and Innovation, Metro North Hospital and Health Service, Brisbane, Queensland, Australia
- Menzies Health Institute Queensland, Griffith University, Gold Coast Campus, Southport, Queensland, Australia
- Centre of Applied Health Economics, School of Medicine, Griffith University, Nathan Campus, Nathan, Queensland, Australia
| | - Jaimon T Kelly
- Menzies Health Institute Queensland, Griffith University, Gold Coast Campus, Southport, Queensland, Australia
- Centre of Applied Health Economics, School of Medicine, Griffith University, Nathan Campus, Nathan, Queensland, Australia
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Bhatt C, Lin E, Ferreira‐Legere LE, Jackevicius CA, Ko DT, Lee DS, Schade K, Johnston S, Anderson TJ, Udell JA. Evaluating Readability, Understandability, and Actionability of Online Printable Patient Education Materials for Cholesterol Management: A Systematic Review. J Am Heart Assoc 2024; 13:e030140. [PMID: 38567668 PMCID: PMC11262522 DOI: 10.1161/jaha.123.030140] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/09/2023] [Accepted: 12/01/2023] [Indexed: 04/04/2024]
Abstract
BACKGROUND Dyslipidemia management is a cornerstone in cardiovascular disease prevention and relies heavily on patient adherence to lifestyle modifications and medications. Numerous cholesterol patient education materials are available online, but it remains unclear whether these resources are suitable for the majority of North American adults given the prevalence of low health literacy. This review aimed to (1) identify printable cholesterol patient education materials through an online search, and (2) evaluate the readability, understandability, and actionability of each resource to determine its utility in practice. METHODS AND RESULTS We searched the MEDLINE database for peer-reviewed educational materials and the websites of Canadian and American national health organizations for gray literature. Readability was measured using the Flesch-Kincaid Grade Level, and scores between fifth- and sixth-grade reading levels were considered adequate. Understandability and actionability were scored using the Patient Education Materials Assessment Tool and categorized as superior (>80%), adequate (50%-70%), or inadequate (<50%). Our search yielded 91 results that were screened for eligibility. Among the 22 educational materials included in the study, 15 were identified through MEDLINE, and 7 were from websites. The readability across all materials averaged an 11th-grade reading level (Flesch-Kincaid Grade Level=11.9±2.59). The mean±SD understandability and actionability scores were 82.8±6.58% and 40.9±28.60%, respectively. CONCLUSIONS The readability of online cholesterol patient education materials consistently exceeds the health literacy level of the average North American adult. Many resources also inadequately describe action items for individuals to self-manage their cholesterol, representing an implementation gap in cardiovascular disease prevention.
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Affiliation(s)
- Chaitanya Bhatt
- Department of MedicineUniversity of TorontoTorontoOntarioCanada
- Temerty Faculty of MedicineUniversity of TorontoTorontoOntarioCanada
- ICESTorontoOntarioCanada
| | - Ethan Lin
- Department of MedicineUniversity of TorontoTorontoOntarioCanada
- Temerty Faculty of MedicineUniversity of TorontoTorontoOntarioCanada
- ICESTorontoOntarioCanada
| | | | - Cynthia A. Jackevicius
- ICESTorontoOntarioCanada
- Department of Pharmacy Practice and Administration, College of PharmacyWestern University of Health SciencesPomonaCAUSA
- Veterans Affairs Greater Los Angeles Healthcare SystemLos AngelesCAUSA
- Institute of Health Policy, Management and Evaluation, Faculty of Medicine, University of TorontoTorontoOntarioCanada
- University Health NetworkTorontoOntarioCanada
| | - Dennis T. Ko
- Department of MedicineUniversity of TorontoTorontoOntarioCanada
- ICESTorontoOntarioCanada
- Institute of Health Policy, Management and Evaluation, Faculty of Medicine, University of TorontoTorontoOntarioCanada
- Division of Cardiology, Schulich Heart Centre, Sunnybrook Health Sciences CentreUniversity of TorontoTorontoOntarioCanada
| | - Douglas S. Lee
- Department of MedicineUniversity of TorontoTorontoOntarioCanada
- Temerty Faculty of MedicineUniversity of TorontoTorontoOntarioCanada
- ICESTorontoOntarioCanada
- Institute of Health Policy, Management and Evaluation, Faculty of Medicine, University of TorontoTorontoOntarioCanada
- Division of Cardiology, Peter Munk Cardiac CentreUniversity Health NetworkTorontoOntarioCanada
- Ted Rogers Centre for Heart ResearchTorontoOntarioCanada
| | - Kathryn Schade
- Faculty of Arts and Social ScienceHuron University CollegeLondonOntarioCanada
| | - Sharon Johnston
- Institut du Savoir Montfort, Department of Family MedicineUniversity of OttawaOttawaOntarioCanada
| | - Todd J. Anderson
- Libin Cardiovascular Institute, Cumming School of Medicine, University of CalgaryAlbertaCanada
| | - Jacob A. Udell
- Department of MedicineUniversity of TorontoTorontoOntarioCanada
- Temerty Faculty of MedicineUniversity of TorontoTorontoOntarioCanada
- ICESTorontoOntarioCanada
- Institute of Health Policy, Management and Evaluation, Faculty of Medicine, University of TorontoTorontoOntarioCanada
- Division of Cardiology, Peter Munk Cardiac CentreUniversity Health NetworkTorontoOntarioCanada
- Women’s College HospitalTorontoOntarioCanada
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15
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Stevens PE, Ahmed SB, Carrero JJ, Foster B, Francis A, Hall RK, Herrington WG, Hill G, Inker LA, Kazancıoğlu R, Lamb E, Lin P, Madero M, McIntyre N, Morrow K, Roberts G, Sabanayagam D, Schaeffner E, Shlipak M, Shroff R, Tangri N, Thanachayanont T, Ulasi I, Wong G, Yang CW, Zhang L, Levin A. KDIGO 2024 Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease. Kidney Int 2024; 105:S117-S314. [PMID: 38490803 DOI: 10.1016/j.kint.2023.10.018] [Citation(s) in RCA: 515] [Impact Index Per Article: 515.0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/31/2023] [Accepted: 10/31/2023] [Indexed: 03/17/2024]
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McCoy MS, Wu A, Burdyl S, Kim Y, Smith NK, Gonzales R, Friedman AB. User Information Sharing and Hospital Website Privacy Policies. JAMA Netw Open 2024; 7:e245861. [PMID: 38602678 PMCID: PMC11009820 DOI: 10.1001/jamanetworkopen.2024.5861] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/27/2023] [Accepted: 02/13/2024] [Indexed: 04/12/2024] Open
Abstract
Importance Hospital websites frequently use tracking technologies that transfer user information to third parties. It is not known whether hospital websites include privacy policies that disclose relevant details regarding tracking. Objective To determine whether hospital websites have accessible privacy policies and whether those policies contain key information related to third-party tracking. Design, Setting, and Participants In this cross-sectional content analysis of website privacy policies of a nationally representative sample of nonfederal acute care hospitals, hospital websites were first measured to determine whether they included tracking technologies that transferred user information to third parties. Hospital website privacy policies were then identified using standardized searches. Policies were assessed for length and readability. Policy content was analyzed using a data abstraction form. Tracking measurement and privacy policy retrieval and analysis took place from November 2023 to January 2024. The prevalence of privacy policy characteristics was analyzed using standard descriptive statistics. Main Outcomes and Measures The primary study outcome was the availability of a website privacy policy. Secondary outcomes were the length and readability of privacy policies and the inclusion of privacy policy content addressing user information collected by the website, potential uses of user information, third-party recipients of user information, and user rights regarding tracking and information collection. Results Of 100 hospital websites, 96 (96.0%; 95% CI, 90.1%-98.9%) transferred user information to third parties. Privacy policies were found on 71 websites (71.0%; 95% CI, 61.6%-79.4%). Policies were a mean length of 2527 words (95% CI, 2058-2997 words) and were written at a mean grade level of 13.7 (95% CI, 13.4-14.1). Among 71 privacy policies, 69 (97.2%; 95% CI, 91.4%-99.5%) addressed types of user information automatically collected by the website, 70 (98.6%; 95% CI, 93.8%-99.9%) addressed how collected information would be used, 66 (93.0%; 95% CI, 85.3%-97.5%) addressed categories of third-party recipients of user information, and 40 (56.3%; 95% CI, 44.5%-67.7%) named specific third-party companies or services receiving user information. Conclusions and Relevance In this cross-sectional study of hospital website privacy policies, a substantial number of hospital websites did not present users with adequate information about the privacy implications of website use, either because they lacked a privacy policy or had a privacy policy that contained limited content about third-party recipients of user information.
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Affiliation(s)
- Matthew S. McCoy
- Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia
| | - Angela Wu
- Carey Law School, University of Pennsylvania, Philadelphia
| | - Sam Burdyl
- Carey Law School, University of Pennsylvania, Philadelphia
| | - Yungjee Kim
- Carey Law School, University of Pennsylvania, Philadelphia
| | - Noell Kristen Smith
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia
| | - Rachel Gonzales
- Department of Emergency Medicine, University of Pennsylvania, Philadelphia
| | - Ari B. Friedman
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia
- Department of Emergency Medicine, University of Pennsylvania, Philadelphia
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17
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Hart A, Schaffhausen CR, McKinney WT, Gonzales K, Perugini J, Snyder JJ, Ladin K. "You don't know what you don't know": A qualitative study of informational needs of patients, family members, and living donors to inform transplant system metrics. Clin Transplant 2024; 38:e15240. [PMID: 38289894 DOI: 10.1111/ctr.15240] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/06/2023] [Revised: 12/28/2023] [Accepted: 01/03/2024] [Indexed: 02/01/2024]
Abstract
INTRODUCTION Informational needs and potential use of transplant metrics, especially among patients, remain understudied and a critical component of the transplant community's commitment to patient-centered care. We sought to understand the perspectives and needs of patients, family members/caregivers, living donors, and deceased donor family members. METHODS We examined decision-making experiences and perspectives on the needs of these stakeholder groups for data about the national transplant system among 58 participants of 14 focus groups and 6 interviews. RESULTS Three major themes emerged: 1) informational priorities and unmet needs (transplantation system processes, long-term outcomes data, prelisting data, patient-centered outcomes, and ability to compare centers and regions); 2) challenges obtaining relevant and trustworthy information (patient burden and effort, challenges with medical jargon, and difficulty finding trustworthy information); and 3) burden of facing the unknown (stress and anxiety leading to difficulty processing information, challenges facing the transplant journey when you "don't know what you don't know"). CONCLUSION Patient, family member, and living donor participation in shared decision-making has been limited by inadequate access to patient-centered information. New metrics and patient-facing data presentations should address these content gaps using best practices to improve understanding and support shared decision-making.
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Affiliation(s)
- Allyson Hart
- Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, Minnesota, USA
- University of Minnesota Medical School, Minneapolis, Minnesota, USA
- Division of Nephrology, Department of Medicine, Hennepin Healthcare, Minneapolis, Minnesota, USA
| | - Cory R Schaffhausen
- Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, Minnesota, USA
- University of Minnesota Medical School, Minneapolis, Minnesota, USA
| | - Warren T McKinney
- Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, Minnesota, USA
- University of Minnesota Medical School, Minneapolis, Minnesota, USA
- Division of Nephrology, Department of Medicine, Hennepin Healthcare, Minneapolis, Minnesota, USA
| | - Kristina Gonzales
- Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts, USA
| | - Julia Perugini
- Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts, USA
| | - Jon J Snyder
- Scientific Registry of Transplant Recipients, Hennepin Healthcare Research Institute, Minneapolis, Minnesota, USA
- University of Minnesota Medical School, Minneapolis, Minnesota, USA
- Division of Epidemiology and Community Health, School of Public Health, University of Minnesota, Minneapolis, Minnesota, USA
| | - Keren Ladin
- Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts, USA
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Kealey MR, Urakami J, Henderson K, Chignell M, Straus SE. In what ways does user experience design improve printed educational materials? APPLIED ERGONOMICS 2023; 113:104081. [PMID: 37393832 DOI: 10.1016/j.apergo.2023.104081] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/07/2022] [Revised: 05/19/2023] [Accepted: 06/22/2023] [Indexed: 07/04/2023]
Abstract
We report on a series of four studies that investigated how user experience design (UXD) can improve printed educational materials (PEMs). We examined the perceived usability of an existing PEM for breast cancer screening and observed the usability problems associated with it (Study 1). We then compared a breast cancer screening PEM created by user experience designers with two other breast cancer screening PEMS, finding that the PEM based on UXD had higher perceived usability, and lower mentions of usability problems, than the other two PEMs (Study 2). We next examined the impact of individual differences in design expertise on perceived usability, this time including a PEM on cervical cancer screening as well as one on breast cancer screening (Study 3). Our concluding study (Study 4) then examined the impacts of UXD on learnability of PEM content as defined by answers to a knowledge questionnaire about screening administered before and after reading the PEM, and by intention to screen for cancer after reading the PEM. The first three studies showed that the involvement of UXD improved the perceived usability of PEMs, and Study 3 showed that designers differ in their ability to create useable PEMs. Study 4 failed to find a corresponding improvement in learnability or intention to screen when UXD was used to improve perceived usability. We conclude that a user experience design approach that incorporates graphic design can improve the perceived usability of PEMs in some situations (e.g., when the PEM material is not too lengthy or complex, and when the graphic designer is sufficiently skilled). However, we found no evidence that lack of perceived usability accounted for the failure of PEMS (found in previous research) to improve knowledge or intention to screen.
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Affiliation(s)
| | - Jacqueline Urakami
- Department of Industrial Engineering and Economics, Tokyo Institute of Technology, Tokyo, Japan.
| | - Kailyn Henderson
- Department of Mechanical and Industrial Engineering, Toronto, Canada
| | - Mark Chignell
- Department of Mechanical and Industrial Engineering, Toronto, Canada
| | - Sharon E Straus
- Knowledge Translation Program, Li Ka Shing Knowledge Institute, Toronto, Ontario, Canada
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Saeed F, Dahl S, Horowitz RK, Duberstein PR, Epstein RM, Fiscella KA, Allen RJ. Development and Acceptability of a Kidney Therapy Decision Aid for Patients Aged 75 Years and Older: A Design-Based Research Involving Patients, Caregivers, and a Multidisciplinary Team. Kidney Med 2023; 5:100671. [PMID: 37492114 PMCID: PMC10363565 DOI: 10.1016/j.xkme.2023.100671] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 07/27/2023] Open
Abstract
Rationale & Objective Many older adults prefer quality of life over longevity, and some prefer conservative kidney management (CKM) over dialysis. There is a lack of patient-decision aids for adults aged 75 years or older facing kidney therapy decisions, which not only include information on dialysis and CKM but also encourage end-of-life planning. We iteratively developed a paper-based patient-decision aid for older people with low literacy and conducted surveys to assess its acceptability. Study Design Design-based research. Setting and Participants Informed by design-based research principles and theory of behavioral activation, a multidisciplinary team of experts created a first version of the patient-decision aid containing 2 components: (1) educational material about kidney therapy options such as CKM, and (2) a question prompt list relevant to kidney therapy and end-of-life decision making. On the basis of the acceptability input of patients and caregivers, separate qualitative interviews of 35 people receiving maintenance dialysis, and with the independent feedback of educated layperson, we further modified the patient-decision aid to create a second version. Analytical Approach We used descriptive statistics to present the results of acceptability surveys and thematic content analyses for patients' qualitative interviews. Results The mean age of patients (n=21) who tested the patient-decision aid was 80 years and the mean age of caregivers (n=9) was 70 years. All respondents held positive views about the educational component and would recommend the educational component to others (100% patients and caregivers). Most of the patients reported that the question prompt list helped them put concerns into words (80% patients and 88% caregivers) and would recommend the question prompt list to others (95% patients and 100% caregivers). Limitations Single-center study. Conclusions Both components of the patient-decision aid received high acceptability ratings. We plan to launch a larger effectiveness study to test the outcomes of a decision-supporting intervention combining the patient-decision aid with palliative care-based decision coaching.
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Affiliation(s)
- Fahad Saeed
- Department of Medicine, Division of Nephrology, University of Rochester School of Medicine and Dentistry, Rochester, NY
- Department of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NY
| | - Spencer Dahl
- University of Rochester School of Medicine and Dentistry, Rochester, NY
| | - Robert K. Horowitz
- Department of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NY
| | - Paul R. Duberstein
- Department of Health Behavior, Society, and Policy, Rutgers School of Public Health, Piscataway, NJ
| | - Ronald M. Epstein
- Department of Medicine, Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, NY
- Department of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, NY
| | - Kevin A. Fiscella
- Department of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, NY
| | - Rebecca J. Allen
- Mount St. Joseph University, School of Behavioral and Natural Sciences, Cincinnati, OH
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Widjaja GJ, Gnjidic D, Clough AJ, Watson K, Hepburn K, Sawan MJ. Availability and evaluation of medication management resources for carers of people with dementia: a scoping review with an environmental scan. Expert Rev Clin Pharmacol 2023; 16:195-205. [PMID: 36787628 DOI: 10.1080/17512433.2023.2181158] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/16/2022] [Accepted: 02/13/2023] [Indexed: 02/16/2023]
Abstract
INTRODUCTION There is a need for resources to guide informal carers in medication management for people with dementia. Availability of resources on medication management guidance has yet to be explored. AREAS COVERED A systematic search of MEDLINE, Embase, CINAHL and PsycINFO was performed in May 2022 to identify and evaluate resources for carers of people with dementia that provide guidance in medication management. Google and known repositories were also searched. Readability of text-based resources was examined using the Flesch-Kincaid reading level, the Flesch reading ease and the Gunning-Fog index. Resources were further evaluated using the Patient Education Material Assessment Tool (PEMAT or PEMAT-A/V). EXPERT OPINION Fifteen resources were identified, which largely focused on medication administration with limited discussion of shared decision-making. Current resources do not appear to have included people living with dementia or their carers in their development and did not address high-risk care settings. Codesign of resources with carers and people with dementia would ensure that resources are comprehensive and target their needs. Future research should therefore focus on development of readily available and understandable resources that provide medication management guidance for carers across different health settings, to comprehensively address the multi-faceted nature of dementia.
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Affiliation(s)
- Gabrielle J Widjaja
- School of Pharmacy, Faculty of Medicine and Health, the University of Sydney NSW, Camperdown, Australia
| | - Danijela Gnjidic
- School of Pharmacy, Faculty of Medicine and Health, the University of Sydney NSW, Camperdown, Australia
| | - Alexander J Clough
- School of Pharmacy, Faculty of Medicine and Health, the University of Sydney NSW, Camperdown, Australia
| | - Karen Watson
- Sydney Nursing School, Faculty of Medicine and Health, the University of Sydney NSW, Camperdown, Australia
| | - Kenneth Hepburn
- Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, United States
| | - Mouna J Sawan
- School of Pharmacy, Faculty of Medicine and Health, the University of Sydney NSW, Camperdown, Australia
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21
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Winterbottom A, Stoves J, Ahmed S, Ahmed A, Daga S. Patient information about living donor kidney transplantation across UK renal units: A critical review. J Ren Care 2023; 49:45-55. [PMID: 34791808 DOI: 10.1111/jorc.12404] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/12/2021] [Revised: 10/20/2021] [Accepted: 10/31/2021] [Indexed: 11/28/2022]
Abstract
BACKGROUND Patient information about living donor kidney transplantation is used to supplement conversations between health professionals, people with advanced kidney disease and potential kidney donors. It is not known if the information is designed to support decision-making about renal replacement options and if it helps people discuss living kidney donation with family and friends. OBJECTIVE Critical review of resources used in outpatient kidney consultations to support patients' decision-making about living kidney donor transplantation. DESIGN Mixed methods including an audit questionnaire and critical analysis of patient information leaflets. PARTICIPANTS AND MEASUREMENTS All kidney transplant centres and renal units in United Kingdom received a questionnaire to elicit by whom, how, and when information about living kidney donation is delivered. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS Thirty-nine (54%) units participated. Patients discussed living donor kidney transplantation with nephrologists (100%), living donor nurse (94%), transplant co-ordinator (94%), and predialysis nurse (86%). Twenty-three leaflets were provided and reviewed, mean quality scores for inclusion of information known to support shared decision-making was m = 2.82 out of 10 (range = 0-6, SD = 1.53). Readability scores indicated they were 'fairly difficult to read' (M = 56.3, range = 0-100, SD = 9.4). Few included cultural and faith information. Two leaflets were designed to facilitate conversations with others about donation. CONCLUSIONS Leaflets are unlikely to adequately support decision-making between options and discussions about donation. Services writing and updating patient leaflets may benefit from our six principles to guide their development.
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Affiliation(s)
- Anna Winterbottom
- Adult Renal Services, Lincoln Wing, St James University Hospital, Leeds, UK
| | - John Stoves
- Bradford Renal Unit, Horton Wing, St Luke's Hospital, Bradford, UK
| | - Shenaz Ahmed
- Division of Psychological and Social Medicine, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
| | - Ahmed Ahmed
- Adult Renal Services, Lincoln Wing, St James University Hospital, Leeds, UK
| | - Sunil Daga
- Adult Renal Services, Lincoln Wing, St James University Hospital, Leeds, UK
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22
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Ørsted Schultz AN, Petersen SR, Fibieger T, Kampmann JD, Bauer EH. Feasibility and First Experiences from an Online Kidney School for Patients with Chronic Kidney Disease. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2023; 20:864. [PMID: 36613185 PMCID: PMC9819898 DOI: 10.3390/ijerph20010864] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/04/2022] [Revised: 12/12/2022] [Accepted: 12/27/2022] [Indexed: 06/17/2023]
Abstract
Objectives: To examine patients' and relatives' experiences with participation in an online kidney school (OKS) and its influence on their choice of treatment modality; furthermore, to report on healthcare professionals' (HCPs) first experiences with OKS. Methods: A mixed-methods design with parallel data collection involving two questionnaires for participants, including patients and relatives and a focus group discussion (FGD) with HCPs. Results: The OKS was feasible, and overall, patients and relatives were satisfied. Participation in the OKS increased the percentage of those who felt ready to make a decision regarding treatment. One over-arching theme (evolvement of the online kidney school over time) and three sub-themes (concerns and perceived barriers, facilitators, and benefits and future possibilities) emerged from the FGD. Conclusions: The OKS proved feasible, was well-accepted, and increased participants' abilities to choose a preferred treatment modality. HCPs displayed initial concerns regarding the quality of the OKS and worried about the practicality of conducting the OKS. They experienced a feeling of something being lost. However, over time, HCPs developed strategies to tackle initial concerns and discovered that patients were more capable of participating than they had anticipated.
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Affiliation(s)
- Anders Nikolai Ørsted Schultz
- Department of Internal Medicine, University Hospital of Southern Denmark, 6200 Aabenraa, Denmark
- Department of Regional Health Research, University of Southern Denmark, 5230 Odense, Denmark
- Center for Innovative Medical Technology, Odense University Hospital, 5000 Odense, Denmark
| | - Stefan Rowald Petersen
- Department of Internal Medicine, University Hospital of Southern Denmark, 6200 Aabenraa, Denmark
| | - Tove Fibieger
- Department of Internal Medicine, University Hospital of Southern Denmark, 6200 Aabenraa, Denmark
| | - Jan Dominik Kampmann
- Department of Internal Medicine, University Hospital of Southern Denmark, 6200 Aabenraa, Denmark
- Department of Regional Health Research, University of Southern Denmark, 5230 Odense, Denmark
| | - Eithne Hayes Bauer
- Department of Internal Medicine, University Hospital of Southern Denmark, 6200 Aabenraa, Denmark
- Department of Regional Health Research, University of Southern Denmark, 5230 Odense, Denmark
- Center for Innovative Medical Technology, Odense University Hospital, 5000 Odense, Denmark
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23
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Ladin K, Tighiouart H, Bronzi O, Koch-Weser S, Wong JB, Levine S, Agarwal A, Ren L, Degnan J, Sewall LN, Kuramitsu B, Fox P, Gordon EJ, Isakova T, Rifkin D, Rossi A, Weiner DE. Effectiveness of an Intervention to Improve Decision Making for Older Patients With Advanced Chronic Kidney Disease : A Randomized Controlled Trial. Ann Intern Med 2023; 176:29-38. [PMID: 36534976 DOI: 10.7326/m22-1543] [Citation(s) in RCA: 29] [Impact Index Per Article: 14.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/23/2022] Open
Abstract
BACKGROUND Older patients with advanced chronic kidney disease (CKD) face difficult decisions about managing kidney failure, frequently experiencing decisional conflict, regret, and treatment misaligned with preferences. OBJECTIVE To assess whether a decision aid about kidney replacement therapy improved decisional quality compared with usual care. DESIGN Multicenter, randomized, controlled trial. (ClinicalTrials.gov: NCT03522740). SETTING 8 outpatient nephrology clinics associated with 4 U.S. centers. PARTICIPANTS English-fluent patients, 70 years and older with nondialysis CKD stages 4 to 5 recruited from 2018 to 2020. INTERVENTION DART (Decision-Aid for Renal Therapy) is an interactive, web-based decision aid for older adults with CKD. Both groups received written education about treatments. MEASUREMENTS Change in the decisional conflict scale (DCS) score from baseline to 3, 6, 12, and 18 months. Secondary outcomes included change in prognostic and treatment knowledge and change in uncertainty. RESULTS Among 400 participants, 363 were randomly assigned: 180 to usual care, 183 to DART. Decisional quality improved with DART with mean DCS declining compared with control (mean difference, -8.5 [95% CI, -12.0 to -5.0]; P < 0.001), with similar findings at 6 months, attenuating thereafter. At 3 months, knowledge improved with DART versus usual care (mean difference, 7.2 [CI, 3.7 to 10.7]; P < 0.001); similar findings at 6 months were modestly attenuated at 18 months (mean difference, 5.9 [CI, 1.4 to 10.3]; P = 0.010). Treatment preferences changed from 58% "unsure" at baseline to 28%, 20%, 23%, and 14% at 3, 6, 12, and 18 months, respectively, with DART, versus 51% to 38%, 35%, 32%, and 18% with usual care. LIMITATION Latinx patients were underrepresented. CONCLUSION DART improved decision quality and clarified treatment preferences among older adults with advanced CKD for 6 months after the DART intervention. PRIMARY FUNDING SOURCE Patient-Centered Outcomes Research Institute (PCORI).
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Affiliation(s)
- Keren Ladin
- Research on Ethics, Aging, and Community Health (REACH Lab), Medford, and Departments of Community Health and Occupational Therapy, Tufts University, Medford, Massachusetts (K.L.)
| | - Hocine Tighiouart
- Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, and Tufts Clinical and Translational Science Institute, Tufts University, Boston, Massachusetts (H.T.)
| | - Olivia Bronzi
- William B. Schwartz Division of Nephrology, Tufts Medical Center, Boston, Massachusetts (O.B., D.E.W.)
| | - Susan Koch-Weser
- Department of Public Health & Community Medicine, Tufts University School of Medicine, Boston, Massachusetts (S.K.)
| | - John B Wong
- Division of Clinical Decision Making, Tufts Medical Center, Boston, Massachusetts (J.B.W.)
| | - Sarah Levine
- Cooper Medical School of Rowan University, Camden, New Jersey (S.L., A.A.)
| | - Arushi Agarwal
- Cooper Medical School of Rowan University, Camden, New Jersey (S.L., A.A.)
| | - Lucy Ren
- The University of North Texas Health Science Center at Fort Worth/Texas College of Osteopathic Medicine, Fort Worth, Texas (L.R.)
| | - Jack Degnan
- Division of Nephrology-Hypertension, UC San Diego, La Jolla, and Nephrology Section, VA San Diego Healthcare System, San Diego, California (J.D., D.R.)
| | - Lexi N Sewall
- Maine Nephrology Associates, Maine Medical Center, Portland, Maine (L.N.S.)
| | - Brianna Kuramitsu
- Division of Transplantation, Department of Surgery, Center for Health Services & Outcomes Research, and Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine, Chicago, Illinois (B.K., E.J.G.)
| | - Patrick Fox
- Division of Nephrology and Hypertension, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois (P.F.)
| | - Elisa J Gordon
- Division of Transplantation, Department of Surgery, Center for Health Services & Outcomes Research, and Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine, Chicago, Illinois (B.K., E.J.G.)
| | - Tamara Isakova
- Division of Nephrology and Hypertension, Department of Medicine, and Center for Translational Metabolism and Health, Institute for Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois (T.I.)
| | - Dena Rifkin
- Division of Nephrology-Hypertension, UC San Diego, La Jolla, and Nephrology Section, VA San Diego Healthcare System, San Diego, California (J.D., D.R.)
| | - Ana Rossi
- Piedmont Transplant Institute, Atlanta, Georgia (A.R.)
| | - Daniel E Weiner
- William B. Schwartz Division of Nephrology, Tufts Medical Center, Boston, Massachusetts (O.B., D.E.W.)
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24
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Paris L, Calvar E, Morello R, Lecouf A, Beaumier M, Lobbedez T, Châtelet V. Perception of social inequities in the access to the kidney transplant waiting list by nephrology trainees: a national survey. BMC Nephrol 2022; 23:394. [PMID: 36482319 PMCID: PMC9733200 DOI: 10.1186/s12882-022-03017-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/27/2022] [Accepted: 11/24/2022] [Indexed: 12/13/2022] Open
Abstract
BACKGROUND Social inequalities in health are responsible for disparities in access to the kidney transplant waiting list (KTWL). The perception of disparities by nephrologists has consequences for the registration on the KTWL. The purposes of our study were to assess the perception of the factors implicated in the disparities in access to the KTWL by nephrology trainees and to assess the quality of the questionnaire. METHODS A questionnaire was developed to assess the perception of the determinants of the inequities in access to waitlisting. Continuous variables were described by median, 1st and 3rd quartiles. Categorical variables were described by frequencies and percentages. A principal component analysis and a hierarchical cluster analysis were performed to approach the correlation between the variables. A scree plot and a factor analysis were performed to determine the dimensions of the questionnaire. The internal consistency was estimated by Cronbach's coefficient. RESULTS The response rate was 98/110 (89%). The determinants of inequities in the access to KTWL not perceived by the nephrology trainees were "female sex", "income level" and "the centre provision to adapt the information to all of the patients" (18,3%, 36,7, 47% respectively). "Age", "being born abroad", "place of living", "education level", "transplant centre", "the health care provider" were determinants of disparities perceived by most of the trainees (85,7%, 75,5%, 82,6%, 78,6%, 73,5% et 78,5% respectively). Items related to the transplant centre were positively correlated, as well as "being born abroad", "education level" and "income level". The Cronbach's coefficient was 0,60. CONCLUSION Social inequalities in health are partially perceived by nephrology trainees. A teaching session could raise nephrologists' awareness of this issue and could help reduce the impact of these disparities on the course of ESKD (end-stage kidney disease) patients.
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Affiliation(s)
- Lucile Paris
- grid.411149.80000 0004 0472 0160Centre Universitaire des Maladies Rénales, CHU de Caen, Avenue de la Côte de Nacre, 14 033 Caen Cedex 9, France ,Normandie Université, Unicaen, UFR de Médecine, 2 rue des Rochambelles, 14032 Caen Cedex, France
| | - Eve Calvar
- grid.411149.80000 0004 0472 0160Centre Universitaire des Maladies Rénales, CHU de Caen, Avenue de la Côte de Nacre, 14 033 Caen Cedex 9, France ,Normandie Université, Unicaen, UFR de Médecine, 2 rue des Rochambelles, 14032 Caen Cedex, France ,U1086 INSERM – ANTICIPE – Centre Régional de Lutte Contre le Cancer, François Baclesse, Caen, France
| | - Rémy Morello
- grid.411149.80000 0004 0472 0160Plateforme de Méthodologie, CHU de Caen, Avenue de la Côte de Nacre, Niveau 3, CS 30001, 14033 Caen Cedex 9, France
| | - Angélique Lecouf
- grid.411149.80000 0004 0472 0160Centre Universitaire des Maladies Rénales, CHU de Caen, Avenue de la Côte de Nacre, 14 033 Caen Cedex 9, France
| | - Mathilde Beaumier
- grid.411149.80000 0004 0472 0160Centre Universitaire des Maladies Rénales, CHU de Caen, Avenue de la Côte de Nacre, 14 033 Caen Cedex 9, France ,Normandie Université, Unicaen, UFR de Médecine, 2 rue des Rochambelles, 14032 Caen Cedex, France ,U1086 INSERM – ANTICIPE – Centre Régional de Lutte Contre le Cancer, François Baclesse, Caen, France
| | - Thierry Lobbedez
- grid.411149.80000 0004 0472 0160Centre Universitaire des Maladies Rénales, CHU de Caen, Avenue de la Côte de Nacre, 14 033 Caen Cedex 9, France ,Normandie Université, Unicaen, UFR de Médecine, 2 rue des Rochambelles, 14032 Caen Cedex, France ,U1086 INSERM – ANTICIPE – Centre Régional de Lutte Contre le Cancer, François Baclesse, Caen, France
| | - Valérie Châtelet
- grid.411149.80000 0004 0472 0160Centre Universitaire des Maladies Rénales, CHU de Caen, Avenue de la Côte de Nacre, 14 033 Caen Cedex 9, France ,Normandie Université, Unicaen, UFR de Médecine, 2 rue des Rochambelles, 14032 Caen Cedex, France ,U1086 INSERM – ANTICIPE – Centre Régional de Lutte Contre le Cancer, François Baclesse, Caen, France
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25
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Rico Hernansanz G, Supervía M, López Sánchez A, Peña Peña D, Arroyo Riaño MO. [Satisfaction and utility of rehabilitative treatment through educational material in patients with COVID-19]. Rehabilitacion (Madr) 2022; 56:320-327. [PMID: 35654626 PMCID: PMC8486673 DOI: 10.1016/j.rh.2021.09.006] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/28/2021] [Revised: 09/22/2021] [Accepted: 09/25/2021] [Indexed: 06/15/2023]
Abstract
OBJECTIVE In Madrid, during the pandemic, due to hospital saturation, medicalisation of hotels was required for the transfer of patients infected by SARS-CoV-2 with favourable evolution. Their typical clinical situation was one of fatigue and physical deconditioning, requiring and benefiting from a rehabilitative approach. The Rehabilitation Department developed educational material in paper format on therapeutic exercise adapted to the different functional situations detected. To describe the profile of patients admitted to a medicalised hotel and to analyse the degree of satisfaction, utility and adherence to the exercise prescribed during hospitalisation and at home and the related factors. MATERIAL AND METHOD We conducted a descriptive study of patients admitted to the Hotel Colon during April and May 2020. We analysed the socio-demographic and clinical variables, as well as the responses to the adherence and satisfaction questionnaires about rehabilitation management during admission and at discharge. RESULTS 100 patients participated in the study with a mean age of 52±14.5 years, where 61% (n=61) were women. 99% (n=99) reported they understood the material with a 90% (n=90) adherence to exercise during admission and 58% (n=58) at discharge. 92% (n=92) were "very satisfied" with the educational material and considered it easy to perform in 100% (n=100) of cases. CONCLUSION The use of paper-based educational material of therapeutic exercise appears to be an effective resource in the management of patients with SARS-CoV-2 infection during admission, thus minimising the exposure of healthcare staff.
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Affiliation(s)
- G Rico Hernansanz
- Servicio de Medicina Física y Rehabilitación, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, España.
| | - M Supervía
- Servicio de Medicina Física y Rehabilitación, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, España; Division of Preventive Cardiology, Department of Cardiovascular Medicine. Mayo Clinic, Minnesota, USA
| | - A López Sánchez
- Servicio de Medicina Física y Rehabilitación, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, España
| | - D Peña Peña
- Servicio de Medicina Física y Rehabilitación, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, España
| | - M O Arroyo Riaño
- Servicio de Medicina Física y Rehabilitación, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, España
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26
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Lorenz EC, Petterson TM, Schinstock CA, Johnson BK, Kukla A, Kremers WK, Sanchez W, Yost KJ. The Relationship Between Health Literacy and Outcomes Before and After Kidney Transplantation. Transplant Direct 2022; 8:e1377. [PMID: 36204189 PMCID: PMC9529030 DOI: 10.1097/txd.0000000000001377] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/27/2022] [Revised: 07/18/2022] [Accepted: 08/02/2022] [Indexed: 11/11/2022] Open
Abstract
Limited health literacy (HL) is associated with decreased kidney function and death in patients with chronic kidney disease. Less is known about the impact of HL on kidney transplant (KT) outcomes. The aim of this study was to examine the relationship between HL and KT outcomes, including rates of waitlisting, healthcare utilization, acute rejection, renal allograft function, renal allograft failure, and death. Methods We performed a retrospective review of HL data previously collected at our center. HL was assessed in a convenience sample of consecutive, English-speaking patients age ≥18 y who were evaluated for KT at Mayo Clinic in Minnesota between June 2015 and March 2017 as part of a practice improvement feasibility project (n = 690). HL was assessed using the 4-item Brief Health Literacy Screening Tool modified for the outpatient KT evaluation process. The 4 items assess confidence completing forms, reading comprehension, and oral literacy. Results Overall, 30.4% of patients had limited or marginal HL. Patients with limited or marginal HL were less likely than those with adequate HL to be waitlisted for KT (hazard ratio = 0.62 and 0.69, respectively), even after adjusting for age, marital status, body mass index, Charlson comorbidity index, or dialysis dependency. Patient HL was not associated with post-KT healthcare utilization, acute rejection, or renal allograft function. Patients with limited or marginal HL appeared to experience a higher risk of renal allograft failure and post-KT death, but the number of events was small, and the relationship was statistically significant only for marginal HL. Conclusions Inadequate HL is common in KT candidates and independently associated with decreased waitlisting for KT. We observed no statistically significant relationship between HL and posttransplant outcomes in our cohort. Further efforts to improve communication in patients with inadequate HL may improve access to KT.
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Affiliation(s)
- Elizabeth C. Lorenz
- Division of Nephrology and Hypertension, Mayo Clinic, Rochester, MN
- William J. von Liebig Center for Transplantation and Clinical Regeneration, Mayo Clinic, Rochester, MN
| | - Tanya M. Petterson
- Divistion of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN
| | - Carrie A. Schinstock
- Division of Nephrology and Hypertension, Mayo Clinic, Rochester, MN
- William J. von Liebig Center for Transplantation and Clinical Regeneration, Mayo Clinic, Rochester, MN
| | - Bradley K. Johnson
- Divistion of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN
| | - Aleksandra Kukla
- Division of Nephrology and Hypertension, Mayo Clinic, Rochester, MN
- William J. von Liebig Center for Transplantation and Clinical Regeneration, Mayo Clinic, Rochester, MN
| | - Walter K. Kremers
- William J. von Liebig Center for Transplantation and Clinical Regeneration, Mayo Clinic, Rochester, MN
- Divistion of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN
| | - William Sanchez
- William J. von Liebig Center for Transplantation and Clinical Regeneration, Mayo Clinic, Rochester, MN
- Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN
| | - Kathleen J. Yost
- Department of Quantitative Health Sciences, Mayo Clinic, Rochester, MN
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27
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Evaluation of reading level of online patient education materials discussing dermatologic care for patients undergoing dialysis. JAAD Int 2022; 8:58-59. [PMID: 35721302 PMCID: PMC9198469 DOI: 10.1016/j.jdin.2022.05.002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/21/2022] Open
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Schultz ANØ, Kampmann JD, Kidholm K, Moos C, Bauer EH. mHealth education for patients with chronic kidney disease: protocol for a scoping review. BMJ Open 2022; 12:e061226. [PMID: 35851005 PMCID: PMC9297200 DOI: 10.1136/bmjopen-2022-061226] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/19/2022] [Accepted: 07/04/2022] [Indexed: 11/21/2022] Open
Abstract
INTRODUCTION More than 10% of the population worldwide is affected by chronic kidney disease (CKD). Despite many promising indications regarding the use of mHealth education for patients with CKD, there is still little evidence regarding the feasibility, effectiveness outcomes and outcome measures. Therefore, we will conduct a scoping review to examine the currently available evidence on mHealth education for patients with CKD and, thus, explore the existing evidence regarding feasibility, effectiveness outcomes and outcome measures, patient and/or provider perception and implementation challenges. METHODS AND ANALYSIS A scoping review will be conducted in accordance with Joanna Briggs Institute Manual for Evidence Synthesis chapter on scoping reviews.MEDLINE, Embase, CINAHL and PsycINFO will be searched. The search strategy will consist of blocks, which have been adopted and modified from former Cochrane reviews. Two independent reviewers will screen studies. Characteristics of the included studies, both quantitative and qualitative, will be reported using quantitative descriptive statistics. Quantitative results will be grouped by objectives (feasibility, effectiveness outcomes and outcome measures, patient perception and implementation challenges), types of intervention and characteristics of participants. Qualitative results will be organised into categories using an iterative process, as suggested by Pollock et al. ETHICS AND DISSEMINATION: As this scoping review does not involve primary data collection, ethical permission is unnecessary. Results of the scoping review will be published in an international peer-reviewed scientific journal. TRIAL REGISTRATION NUMBER Open Science Framework (https://osf.io/gxkeh/).
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Affiliation(s)
- Anders Nikolai Ørsted Schultz
- Research Unit, Department of Internal Medicine University Hospital of Southern Denmark, University Hospital of Southern Denmark, Aabenraa, Denmark
- Department of Regional Health Research, University of Southern Denmark Faculty of Health Sciences, Odense, Denmark
- Centre for Innovative Medical Technology, Odense University Hospital, Odense, Denmark
| | - Jan Dominik Kampmann
- Research Unit, Department of Internal Medicine University Hospital of Southern Denmark, University Hospital of Southern Denmark, Aabenraa, Denmark
| | - Kristian Kidholm
- Centre for Innovative Medical Technology, Odense University Hospital, Odense, Denmark
| | - Caroline Moos
- Department of Research and Education, University Hospital of Southern Denmark, Aabenraa, Denmark
| | - Eithne Hayes Bauer
- Research Unit, Department of Internal Medicine University Hospital of Southern Denmark, University Hospital of Southern Denmark, Aabenraa, Denmark
- Department of Regional Health Research, University of Southern Denmark Faculty of Health Sciences, Odense, Denmark
- Centre for Innovative Medical Technology, Odense University Hospital, Odense, Denmark
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Leroy G, Kauchak D, Haeger D, Spegman D. Evaluation of an online text simplification editor using manual and automated metrics for perceived and actual text difficulty. JAMIA Open 2022; 5:ooac044. [PMID: 35663117 PMCID: PMC9155254 DOI: 10.1093/jamiaopen/ooac044] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/17/2021] [Revised: 02/22/2022] [Accepted: 05/23/2022] [Indexed: 11/25/2022] Open
Abstract
Objective Simplifying healthcare text to improve understanding is difficult but critical to improve health literacy. Unfortunately, few tools exist that have been shown objectively to improve text and understanding. We developed an online editor that integrates simplification algorithms that suggest concrete simplifications, all of which have been shown individually to affect text difficulty. Materials and Methods The editor was used by a health educator at a local community health center to simplify 4 texts. A controlled experiment was conducted with community center members to measure perceived and actual difficulty of the original and simplified texts. Perceived difficulty was measured using a Likert scale; actual difficulty with multiple-choice questions and with free recall of information evaluated by the educator and 2 sets of automated metrics. Results The results show that perceived difficulty improved with simplification. Several multiple-choice questions, measuring actual difficulty, were answered more correctly with the simplified text. Free recall of information showed no improvement based on the educator evaluation but was better for simplified texts when measured with automated metrics. Two follow-up analyses showed that self-reported education level and the amount of English spoken at home positively correlated with question accuracy for original texts and the effect disappears with simplified text. Discussion Simplifying text is difficult and the results are subtle. However, using a variety of different metrics helps quantify the effects of changes. Conclusion Text simplification can be supported by algorithmic tools. Without requiring tool training or linguistic knowledge, our simplification editor helped simplify healthcare related texts.
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Affiliation(s)
- Gondy Leroy
- Management Information Systems, Eller College of Management, University of Arizona, Tucson, Arizona, USA
| | - David Kauchak
- Computer Science, Pomona College, Claremont, California, USA
| | - Diane Haeger
- El Rio Community Health Center, Tucson, Arizona, USA
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Ó Doinn T, Broderick JM, Clarke R, Hogan N. Readability of Patient Educational Materials in Sports Medicine. Orthop J Sports Med 2022; 10:23259671221092356. [PMID: 35547607 PMCID: PMC9082750 DOI: 10.1177/23259671221092356] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/23/2021] [Accepted: 02/03/2022] [Indexed: 11/15/2022] Open
Abstract
Background The internet has become an increasingly popular resource among sports medicine patients seeking injury-related information. Numerous organizations recommend that patient educational materials (PEMs) should not exceed sixth-grade reading level. Despite this, studies have consistently shown the reading grade level (RGL) of PEMs to be too demanding across a range of surgical specialties. Purpose To determine the readability of online sports medicine PEMs. Study Design Cross-sectional study. Methods The readability of 363 articles pertaining to sports medicine from 5 leading North American websites was assessed using 8 readability formulas: Flesch-Kincaid Reading Grade Level, Flesch Reading Ease Score, Raygor Estimate, Fry Readability Formula, Simple Measure of Gobbledygook, Coleman-Liau Index, FORCAST Readability Formula, and Gunning Fog Index. The mean RGL of each article was compared with the sixth- and eighth-grade reading level in the United States. The cumulative mean website RGL was also compared among individual websites. Results The overall cumulative mean RGL was 12.2 (range, 7.0-17.7). No article (0%) was written at a sixth-grade reading level, and only 3 articles (0.8%) were written at or below the eighth-grade reading level. The overall cumulative mean RGL was significantly higher than the sixth-grade [95% CI for the difference, 6.0-6.5; P < .001] and eighth-grade (95% CI, 4.0-4.5; P < .001) reading levels. There was a significant difference among the cumulative mean RGLs of the 5 websites assessed. Conclusion Sports medicine PEMs produced by leading North American specialty websites have readability scores that are above the recommended levels. Given the increasing preference of patients for online health care materials, the imperative role of health literacy in patient outcomes, and the growing body of online resources, significant work needs to be undertaken to improve the readability of these materials.
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Affiliation(s)
- Tiarnán Ó Doinn
- Department of Trauma and Orthopaedic Surgery, St. James’s Hospital, Dublin, Ireland
| | - James M. Broderick
- Department of Trauma and Orthopaedic Surgery, St. James’s Hospital, Dublin, Ireland
| | - Rebecca Clarke
- Department of Trauma and Orthopaedic Surgery, St. James’s Hospital, Dublin, Ireland
| | - Niall Hogan
- Department of Trauma and Orthopaedic Surgery, St. James’s Hospital, Dublin, Ireland
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Okuhara T, Ishikawa H, Ueno H, Okada H, Kato M, Kiuchi T. Readability assessment of vaccine information: A systematic review for addressing vaccine hesitancy. PATIENT EDUCATION AND COUNSELING 2022; 105:331-338. [PMID: 34090717 DOI: 10.1016/j.pec.2021.05.039] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/24/2020] [Revised: 05/23/2021] [Accepted: 05/28/2021] [Indexed: 06/12/2023]
Abstract
OBJECTIVE Vaccine hesitancy is a problem attracting growing attention and concern. Communication can be an effective tool to counteract vaccine hesitancy and promote optimal vaccine uptake. Readability has been recognized as one of the more important aspects of health communication for achieving good health literacy. We reviewed studies of readability assessment in the area of vaccine communication. METHODS We conducted a systematic literature search in September 2020, using four online databases (Medline, CINAHL, PsycArticles, and PsycINFO). We included studies that assessed the readability level of online and offline vaccine information materials. RESULTS We found 12 articles that were appropriate for inclusion. Ten of the studies were published after 2016. The readability levels of the majority of the materials assessed were found to be difficult and higher than 8th-grade level. CONCLUSION Readability assessments of vaccine information are scarce. The limited evidence shows that the readability level of vaccine information supplied by health care providers is more difficult to read than recommended. More studies on the readability of vaccine information are recommended. PRACTICE IMPLICATIONS Difficulty reading vaccine information may influence attitudes toward acceptance of or hesitancy to take vaccines. It is recommended that health care professionals use guidelines and tools to create easy-to-read vaccine information.
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Affiliation(s)
- Tsuyoshi Okuhara
- Department of Health Communication, School of Public Health, The University of Tokyo, 7-3-1, Hongo, Bunkyo-ku, Tokyo 113-8655, Japan.
| | - Hirono Ishikawa
- School of Public Health, Teikyo University School of Medicine, 2-11-1, Kaga, Itabashi-ku, Tokyo 173-8605, Japan
| | - Haruka Ueno
- Department of Health and Dietetics, Faculty of Health and Medical Science, Teikyo Heisei University, 2-5-4, Higashi-ikebukuro, Toshima-ku, Tokyo 170-8445, Japan
| | - Hiroko Okada
- Department of Health Communication, School of Public Health, The University of Tokyo, 7-3-1, Hongo, Bunkyo-ku, Tokyo 113-8655, Japan
| | - Mio Kato
- School of Public Health, Teikyo University School of Medicine, 2-11-1, Kaga, Itabashi-ku, Tokyo 173-8605, Japan
| | - Takahiro Kiuchi
- Department of Health Communication, School of Public Health, The University of Tokyo, 7-3-1, Hongo, Bunkyo-ku, Tokyo 113-8655, Japan
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Acceptability of Plant-Based Diets for People with Chronic Kidney Disease: Perspectives of Renal Dietitians. Nutrients 2022; 14:nu14010216. [PMID: 35011091 PMCID: PMC8747619 DOI: 10.3390/nu14010216] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/17/2021] [Revised: 12/24/2021] [Accepted: 01/01/2022] [Indexed: 02/08/2023] Open
Abstract
The purpose of this study was to explore the perspective of renal dietitians regarding plant-based diets for chronic kidney disease (CKD) management and evaluate the acceptability of a hypothetical plant-based dietary prescription aiming for the consumption of 30 unique plant foods per week. This study used an exploratory mixed methods design. Forty-six renal dietitians participated in either an online survey (n = 35) or an in-depth interview (n = 11). Dietitians perceived that plant-based diets could address multiple clinical concerns relevant to CKD. Forty percent of survey respondents reported the hypothetical dietary prescription was realistic for people with CKD, 34.3% were unsure, and 25.7% perceived it as unrealistic. Strengths of the hypothetical prescription included shifting the focus to whole foods and using practical resources like recipes. Limited staffing, time, and follow-up opportunities with patients, as well as differing nutrition philosophies were the most commonly reported challenges to implementation; while a supportive multidisciplinary team was identified as an important enabler. To increase patient acceptance of plant-based dietary approaches, education about plant food benefits was recommended, as was implementing small, incremental dietary changes. Successful implementation of plant-based diets is perceived to require frequent patient contact and ongoing education and support by a dietitian. Buy-in from the multidisciplinary team was also considered imperative.
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Boonstra MD, Reijneveld SA, Navis G, Westerhuis R, de Winter AF. Co-Creation of a Multi-Component Health Literacy Intervention Targeting Both Patients with Mild to Severe Chronic Kidney Disease and Health Care Professionals. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2021; 18:ijerph182413354. [PMID: 34948960 PMCID: PMC8704507 DOI: 10.3390/ijerph182413354] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 09/22/2021] [Revised: 12/15/2021] [Accepted: 12/16/2021] [Indexed: 11/30/2022]
Abstract
Limited health literacy (LHL) is common in chronic kidney disease (CKD) patients and frequently associated with worse self-management. Multi-component interventions targeted at patients and healthcare professionals (HCPs) are recommended, but evidence is limited. Therefore, this study aims to determine the objectives and strategies of such an intervention, and to develop, produce and evaluate it. For this purpose, we included CKD patients with LHL (n = 19), HCPs (n = 15), educators (n = 3) and students (n = 4) from general practices, nephrology clinics and universities in an Intervention Mapping (IM) process. The determined intervention objectives especially address the patients’ competences in maintaining self-management in the long term, and communication competences of patients and HCPs. Patients preferred visual strategies and strategies supporting discussion of needs and barriers during consultations to written and digital strategies. Moreover, they preferred an individual approach to group meetings. We produced a four-component intervention, consisting of a visually attractive website and topic-based brochures, consultation cards for patients, and training on LHL for HCPs. Evaluation revealed that the intervention was useful, comprehensible and fitting for patients’ needs. Healthcare organizations need to use visual strategies more in patient education, be careful with digitalization and group meetings, and train HCPs to improve care for patients with LHL. Large-scale research on the effectiveness of similar HL interventions is needed.
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Affiliation(s)
- Marco D. Boonstra
- Department of Health Sciences, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands; (S.A.R.); (A.F.d.W.)
- Correspondence: ; Tel.: +31653243985
| | - Sijmen A. Reijneveld
- Department of Health Sciences, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands; (S.A.R.); (A.F.d.W.)
| | - Gerjan Navis
- Department of Nephrology, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands; (G.N.); (R.W.)
| | - Ralf Westerhuis
- Department of Nephrology, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands; (G.N.); (R.W.)
| | - Andrea F. de Winter
- Department of Health Sciences, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands; (S.A.R.); (A.F.d.W.)
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Szabó P, Bíró É, Kósa K. Readability and Comprehension of Printed Patient Education Materials. Front Public Health 2021; 9:725840. [PMID: 34917569 PMCID: PMC8670754 DOI: 10.3389/fpubh.2021.725840] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/15/2021] [Accepted: 10/25/2021] [Indexed: 11/17/2022] Open
Abstract
Background: Health literacy, a recently determined construct plays an important role in how individuals are able to manage their health. A useful approach for the assessment of health literacy is to measure the comprehension of available patient education materials (PEMs). Objective: We aimed at assessing the usefulness of PEMS available in Hungarian by testing comprehension of selected PEMs in different groups of users. Methods: Comprehension of patient education materials in the domain of healthcare was tested by selecting PEMs and creating questions based on their text in 3 dimensions of health literacy: understand, process/appraise, apply/use. Twenty questions were created that could be answered without pre-existing knowledge by reading the appropriate text taken from PEMs. Comprehension was examined in four groups: laypersons, non-professional healthcare workers, 1st year healthcare students, and 5th year medical students. Readability indices were calculated for the same texts to which questions were created. Results: Laypersons answered <50% of the PEMs-based questions correctly. Non-professional healthcare workers performed better with 57% of right answers but significantly worse than healthcare students or medical students. Those with at least high school qualification (maturity exam) showed significantly higher comprehension compared to those with lower educational attainment. Persons in good or very good health also had significantly better comprehension than those in less favorable health. All readability indices showed that comprehension of the tested PEMs required at least 10 years of schooling or more. Therefore, these PEMS are difficult to understand for persons with less than high school level of education. Conclusion: Rephrasing of the investigated patient educational materials would be recommended so that they better fit the educational attainment of the Hungarian population. Evaluation of the readability and comprehensibility of other PEMs also seems warranted.
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Affiliation(s)
- Pálma Szabó
- Faculty of Medicine, Department of Behavioral Sciences, University of Debrecen, Debrecen, Hungary.,Doctoral School of Health Sciences, University of Debrecen, Debrecen, Hungary
| | - Éva Bíró
- Faculty of Medicine, Department of Public Health and Epidemiology, University of Debrecen, Debrecen, Hungary
| | - Karolina Kósa
- Faculty of Medicine, Department of Behavioral Sciences, University of Debrecen, Debrecen, Hungary
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Ferreira da Silva P, Talson MD, Finlay J, Rossum K, Soroka KV, McCormick M, Desjarlais A, Vorster H, Fontaine G, Sass R, James M, Sood MM, Tong A, Pannu N, Tennankore K, Thompson S, Tonelli M, Bohm C. Patient, Caregiver, and Provider Perspectives on Improving Information Delivery in Hemodialysis: A Qualitative Study. Can J Kidney Health Dis 2021; 8:20543581211046078. [PMID: 34721884 PMCID: PMC8552378 DOI: 10.1177/20543581211046078] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/17/2021] [Accepted: 07/21/2021] [Indexed: 12/14/2022] Open
Abstract
Background Patients with kidney failure are exposed to a surfeit of new information about their disease and treatment, often resulting in ineffective communication between patients and providers. Improving the amount, timing, and individualization of information received has been identified as a priority in in-center hemodialysis care. Objective To describe and explicate patient, caregiver, and health care provider perspectives regarding challenges and solutions to information transfer in clinical hemodialysis care. Design In this multicenter qualitative study, we gathered perspectives of patients, their caregivers, and health care providers conducted through focus groups and interviews. Setting Five Canadian hemodialysis centers: Calgary, Edmonton, Winnipeg, Ottawa, and Halifax. Participants English-speaking adults receiving in-center hemodialysis for longer than 6 months, their caregivers, and hemodialysis health care providers. Methods Between May 24, 2017, and August 16, 2018, data collected through focus groups and interviews with hemodialysis patients and their caregivers subsequently informed semi-structured interviews with health care providers. For this secondary analysis, data were analyzed through an inductive thematic analysis using grounded theory, to examine the data more deeply for overarching themes. Results Among 82 patients/caregivers and 31 healthcare providers, 6 main themes emerged. Themes identified from patients/caregivers were (1) overwhelmed at initiation of hemodialysis care, (2) need for peer support, and (3) improving comprehension of hemodialysis processes. Themes identified from providers were (1) time constraints with patients, (2) relevance of information provided, and (3) technological innovations to improve patient engagement. Limitations Findings were limited to Canadian context, English speakers, and individuals receiving hemodialysis in urban centers. Conclusions Participants identified challenges and potential solutions to improve the amount, timing, and individualization of information provided regarding in-center hemodialysis care, which included peer support, technological innovations, and improved knowledge translation activities. Findings may inform the development of interventions and strategies aimed at improving information delivery to facilitate patient-centered hemodialysis care.
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Affiliation(s)
| | - Melanie D Talson
- Max Rady College of Medicine, University of Manitoba, Winnipeg, Canada
| | - Juli Finlay
- Cumming School of Medicine, University of Calgary, AB, Canada
| | - Krista Rossum
- Max Rady College of Medicine, University of Manitoba, Winnipeg, Canada
| | | | | | - Arlene Desjarlais
- Can-SOLVE CKD Network Patient Council, Canada.,Can-SOLVE CKD Network Indigenous Peoples' Engagement and Research Council, Winnipeg, MB, Canada
| | | | - George Fontaine
- Can-SOLVE CKD Network Patient Council, Canada.,Can-SOLVE CKD Network Indigenous Peoples' Engagement and Research Council, Winnipeg, MB, Canada
| | - Rachelle Sass
- Max Rady College of Medicine, University of Manitoba, Winnipeg, Canada
| | - Matthew James
- Cumming School of Medicine, University of Calgary, AB, Canada
| | - Manish M Sood
- Department of Medicine, Ottawa Hospital Research Institute, University of Ottawa, ON, Canada
| | - Allison Tong
- Sydney School of Public Health, The University of Sydney, NSW, Australia
| | - Neesh Pannu
- Department of Medicine, University of Alberta, Edmonton, Canada
| | | | | | | | - Clara Bohm
- Max Rady College of Medicine, University of Manitoba, Winnipeg, Canada.,Chronic Disease Innovation Centre, Seven Oaks General Hospital, Winnipeg, MB, Canada
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Okuhara T, Okada H, Goto E, Kiuchi T. Readability Assessment of HPV Vaccination and Cervical Cancer Information: A Systematic Scoping Review. Healthcare (Basel) 2021; 9:1246. [PMID: 34682926 PMCID: PMC8535382 DOI: 10.3390/healthcare9101246] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/12/2021] [Revised: 09/14/2021] [Accepted: 09/19/2021] [Indexed: 11/17/2022] Open
Abstract
It is important to provide information on HPV vaccination and on early detection and early treatment for cervical cancer. Readability is a key aspect in the success of cancer communication using written health information. We reviewed studies assessing the readability of information on HPV vaccination and cervical cancer. We conducted a systematic literature search in June 2021 using four online databases (Medline, CINAHL, PsycArticles, and PsycINFO). Studies that assessed the readability level of online and offline information regarding HPV vaccination and cervical cancer were included in the review. Twelve articles were deemed fit for study inclusion. Our results showed that most of the materials assessed were difficult to read and higher than eighth-grade reading level. Few of the materials assessed were at the recommended grade 5-6 level or below. Readability assessments of HPV vaccination and cervical cancer information are scarce. Additional studies on the readability of information regarding HPV vaccination and cervical cancer are recommended. Health professionals should develop health information on HPV vaccination and cervical cancer that is easy to read.
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Affiliation(s)
- Tsuyoshi Okuhara
- Department of Health Communication, School of Public Health, The University of Tokyo, Tokyo 113-8655, Japan; (H.O.); (E.G.); (T.K.)
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Saeed F, Shah AY, Allen RJ, Epstein RM, Fiscella KA. Communication principles and practices for making shared decisions about renal replacement therapy: a review of the literature. Curr Opin Nephrol Hypertens 2021; 30:507-515. [PMID: 34148978 PMCID: PMC8373782 DOI: 10.1097/mnh.0000000000000731] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/07/2023]
Abstract
PURPOSE OF REVIEW To provide an overview of the skill set required for communication and person-centered decision making for renal replacement therapy (RRT) choices, especially conservative kidney management (CKM). RECENT FINDINGS Research on communication and decision-making skills for shared RRT decision making is still in infancy. We adapt literature from other fields such as primary care and oncology for effective RRT decision making. SUMMARY We review seven key skills: (1) Announcing the need for decision making (2) Agenda Setting (3) Educating patients about RRT options (4) Discussing prognoses (5) Eliciting patient preferences (6) Responding to emotions and showing empathy, and (7) Investing in the end. We also provide example sentences to frame the conversations around RRT choices including CKM.
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Affiliation(s)
- Fahad Saeed
- Departments of Medicine and Public Health, Division of Nephrology
- Division of Palliative Care
- University of Rochester School of Medicine, National University of Medical Sciences
| | - Amna Yousaf Shah
- Rawalpindi, Pakistan; CITE Center, Department of Behavioral and Natural Sciences
| | | | - Ronald M Epstein
- Division of Palliative Care
- Department of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA
| | - Kevin A Fiscella
- Department of Family Medicine and Center for Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA
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Beaumier M, Calvar E, Launay L, Béchade C, Lanot A, Schauder N, Touré F, Lassalle M, Couchoud C, Châtelet V, Lobbedez T. Effect of social deprivation on peritoneal dialysis uptake: A mediation analysis with the data of the REIN registry. Perit Dial Int 2021; 42:361-369. [PMID: 34196237 DOI: 10.1177/08968608211023268] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
BACKGROUND Social deprivation could act as a barrier to peritoneal dialysis (PD). The objective of this study was to assess the association between social deprivation estimated by the European deprivation index (EDI) and PD uptake and to explore the potential mediators of this association. METHODS From the Renal Epidemiology and Information Network registry, patients who started dialysis in 2017 were included. The EDI was calculated based on the patient's address. The event of interest was the proportion of PD 3 months after dialysis initiation. A mediation analysis with a counterfactual approach was carried out to evaluate the direct and indirect effect of the EDI on the proportion of PD. RESULTS Among the 9588 patients included, 1116 patients were on PD; 2894 (30.2%) patients belonged to the most deprived quintile (Q5). PD was associated with age >70 years (odds ratio (OR) 0.79 [95% confidence interval (CI): 0.69-0.91]), male gender (0.85 [95% CI: 0.74-0.97]), cardiovascular disease (OR 0.86 [95% CI: 0.86-1.00]), chronic heart failure (OR 1.34 [95% CI: 1.13-1.58]), active cancer (OR 0.67 [95% CI: 0.53-0.85]) and obesity (OR 0.75 [95% CI: 0.63-0.89]). In the mediation analysis, Q5 had a direct effect on PD proportion OR 0.84 [95% CI: 0.73-0.96]. The effect of Q5 on the proportion of PD was mediated by haemoglobin level at dialysis initiation (OR 0.96 [95% CI: 0.94-0.98]) and emergency start (OR 0.98 [95% CI: 0.96-0.99]). CONCLUSION Social deprivation, estimated by the EDI, was associated with a lower PD uptake. The effect of social deprivation was mediated by haemoglobin level, a proxy of predialysis care and emergency start.
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Affiliation(s)
- Mathilde Beaumier
- Service de Néphrologie, Centre Hospitalier Public du Cotentin, rue du Val de Saire, Cherbourg, France
| | - Eve Calvar
- Centre Universitaire des Maladies Rénales, CHU de Caen Avenue Côte de Nacre, Caen, France
| | - Ludivine Launay
- U1086 Inserm, ANTICIPE, Centre de Lutte Contre le Cancer François Baclesse, Caen, France
| | - Clémence Béchade
- Centre Universitaire des Maladies Rénales, CHU de Caen Avenue Côte de Nacre, Caen, France.,U1086 Inserm, ANTICIPE, Centre de Lutte Contre le Cancer François Baclesse, Caen, France
| | - Antoine Lanot
- Centre Universitaire des Maladies Rénales, CHU de Caen Avenue Côte de Nacre, Caen, France
| | - Nicole Schauder
- REIN Registry, Biomedecine Agency, France.,Observatoire Régional de la Santé Grand Est, Strasbourg, France
| | - Fatouma Touré
- REIN Registry, Biomedecine Agency, France.,Service de Néphrologie, dialyse, transplantations, CHU de Limoges, Caen, France
| | | | | | - Valérie Châtelet
- Centre Universitaire des Maladies Rénales, CHU de Caen Avenue Côte de Nacre, Caen, France.,U1086 Inserm, ANTICIPE, Centre de Lutte Contre le Cancer François Baclesse, Caen, France
| | - Thierry Lobbedez
- Centre Universitaire des Maladies Rénales, CHU de Caen Avenue Côte de Nacre, Caen, France.,U1086 Inserm, ANTICIPE, Centre de Lutte Contre le Cancer François Baclesse, Caen, France.,RDPLF, Pontoise, Caen, France
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Koch-Weser S, Porteny T, Rifkin DE, Isakova T, Gordon EJ, Rossi A, Baumblatt GL, St Clair Russell J, Damron KC, Wofford S, Agarwal A, Weiner DE, Ladin K. Patient Education for Kidney Failure Treatment: A Mixed-Methods Study. Am J Kidney Dis 2021; 78:690-699. [PMID: 33894282 DOI: 10.1053/j.ajkd.2021.02.334] [Citation(s) in RCA: 28] [Impact Index Per Article: 7.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/10/2020] [Accepted: 02/12/2021] [Indexed: 01/27/2023]
Abstract
RATIONALE & OBJECTIVE Education programs are needed for people with advanced chronic kidney disease to understand kidney failure treatment options and participate in shared decision-making (SDM). Little is known about the content and accessibility of current education programs or whether they support SDM. STUDY DESIGN Stakeholder-engaged, mixed-methods design incorporating qualitative observations and interviews, and a quantitative content analysis of slide presentations. SETTING & PARTICIPANTS Four sites located in Boston, Chicago, Portland (Maine), and San Diego. ANALYTICAL APPROACH Thematic analysis based on the Ottawa Framework (observations and interviews) and descriptive statistical analysis (slide presentations). RESULTS Data were collected from observations of 9 education sessions, 5 semistructured interviews with educators, and 133 educational slide presentations. Sites offered group classes or one-on-one sessions. Development, quality, and accuracy of educational materials varied widely. Educators emphasized dialysis (often in-center hemodialysis), with little mention of conservative management. Educators reported patients were often referred too late to education sessions and that some patients become overwhelmed if they learn of the implications of kidney failure in a group setting. Commonly, sessions were general and did not provide opportunities for tailored information most supportive of SDM. Few nephrologists were involved in education sessions or aware of the educational content. Content gaps included prognosis, decision support, mental health and cognition, advance care planning, cost, and diet. Slide presentations used did not consistently reflect best practices related to health literacy. LIMITATIONS Findings may not be broadly generalizable. CONCLUSIONS Education sessions focused on kidney failure treatment options do not consistently follow best practices related to health literacy or for supporting SDM. To facilitate SDM, the establishment of expectations for kidney failure treatment options should be clearly defined and integrated into the clinical workflow. Addressing content gaps, health literacy, and communication with nephrologists is necessary to improve patient education in the setting of advanced chronic kidney disease.
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Affiliation(s)
- Susan Koch-Weser
- Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston
| | - Thalia Porteny
- Departments of Occupational Therapy, Tufts University, Medford, MA
| | - Dena E Rifkin
- Division of Nephrology, Veterans Affairs Healthcare System and University of California, San Diego, San Diego, CA
| | - Tamara Isakova
- Center for Translational Metabolism and Health, Institute for Public Health and Medicine, Chicago, IL
| | - Elisa J Gordon
- Department of Surgery, Division of Transplantation, Center for Health Services and Outcomes Research, and Center for Bioethics and Medical Humanities, Chicago, IL
| | - Ana Rossi
- Piedmont Transplant Institute, Atlanta, GA
| | - Geri Lynn Baumblatt
- Northwestern University Feinberg School of Medicine; Articulations Consulting, Chicago, IL
| | | | | | | | - Arushi Agarwal
- William B. Schwartz Division of Nephrology, Tufts Medical Center, Boston
| | - Daniel E Weiner
- William B. Schwartz Division of Nephrology, Tufts Medical Center, Boston
| | - Keren Ladin
- Departments of Occupational Therapy, Tufts University, Medford, MA; Community Health and Research on Ethics, Aging, and Community Health (REACH Lab), Tufts University, Medford, MA.
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40
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Genale C, Issa A, Negash B, Wondu K. Assessing the Readability of Medicine Information Materials: The Case of Tikur Anbessa Specialized Hospital - Mixed Approach. Patient Prefer Adherence 2021; 15:635-644. [PMID: 33790543 PMCID: PMC7997408 DOI: 10.2147/ppa.s302275] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/18/2021] [Accepted: 03/06/2021] [Indexed: 11/23/2022] Open
Abstract
BACKGROUND Patients are frequently provided with medicine information materials (MIMs). Rendering medicine information through written material is a reliable method. Readability is an important attribute of written material that can affect the reader's ability to comprehend. Patient's perception can also affect the comprehensibility of written MIMs. OBJECTIVE The objectives of the study were to assess the readability of medicine information in Tikur Anbessa Specialized Hospital (TASH); and assessing patients' perception and understanding of medicine information materials. METHODS This was a cross-sectional study conducted from September 21, 2019 to November 24, 2020, at TASH. Quantitative and qualitative data collection approaches were used in this research. The readability value of each material was determined in accordance with the Flesch Reading ease scores (FRE) and Flesch-Kincaid Grade Level (FKGL). The tools compute readability based on an average number of syllables per word and an average number of words per sentence. FRE provides scores from 0 to 100; higher scores mean easily comprehensible while FKGL sets grade levels for written texts. A structured interview was administered with questions about how MIMs had been used, and was analyzed qualitatively. RESULTS The results of this research showed low readability scores of MIMs found in TASH. Most patients do not get MIMs and are unaware of how to use them. They are interested to receive and read medicines information from pharmacists and physicians. Moreover, most of them preferred information through both verbal and written forms. CONCLUSION The readability levels of selected MIMs obtained from TASH are found to be not compliant with the patients' needs. This might be worsening their health outcomes and resulting in poorer use of healthcare services.
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Affiliation(s)
- Chachu Genale
- Department of Pharmaceutics and Social Pharmacy, School of Pharmacy, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
| | - Arebu Issa
- Department of Pharmaceutics and Social Pharmacy, School of Pharmacy, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
| | - Bezawit Negash
- Department of Pharmaceutics and Social Pharmacy, School of Pharmacy, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
| | - Kebede Wondu
- Department of Pharmaceutics and Social Pharmacy, School of Pharmacy, College of Health Sciences, Addis Ababa University, Addis Ababa, Ethiopia
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Doinn TÓ, Broderick JM, Abdelhalim MM, Quinlan JF. Readability of Patient Educational Materials in Hip and Knee Arthroplasty: Has a Decade Made a Difference? J Arthroplasty 2020; 35:3076-3083. [PMID: 32631729 DOI: 10.1016/j.arth.2020.05.076] [Citation(s) in RCA: 16] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/06/2020] [Accepted: 05/29/2020] [Indexed: 02/02/2023] Open
Abstract
BACKGROUND The Internet has become an increasingly popular resource among orthopedic patients for health education. Numerous organisations recommend that patient educational materials (PEMs) should not exceed the 6th grade reading level. Despite this, studies have repeatedly shown the reading grade level (RGL) of PEMs to be too advanced across a range of surgical specialties. We aimed to determine the readability of online hip and knee arthroplasty PEMs. METHODS The readability of 134 articles pertaining to hip and knee arthroplasty from 5leading worldwide healthcare websites were assessed, using 8 readability formulae; the Flesch-Kincaid Reading Grade Level, the Flesch Reading Ease Score, Raygor Estimate, SMOG, Coleman-Liau, Fry, FORCAST and Gunning Fog. The mean RGL was compared to the 6th and 8thgrade reading level. The mean RGL of each website was also compared. RESULTS The mean cumulative RGL was 12 (range = 7-16.1). No articles (0%) were written at a 6th grade reading level and only 4 articles (3%) were written at or below the 8th grade reading level. The mean RGL was significantly higher than the 6th (95% CI, 5.62-6.30; P < .0001) and 8th grade reading level (95% CI, 3.63-4.30; P < .0001). There was a significant difference between the RGLs of the 5websites (P = .001). CONCLUSION Arthroplasty PEMs produced by leading worldwide healthcare organisations have readability scores that are above the recommended levels. Given the imperative role of health literacy in patient outcomes and satisfaction, and the increasing prevalence of Internet use among orthopedic patients, a substantial amount of work needs to be done to improve the readability of these materials.
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Affiliation(s)
- Tiarnán Ó Doinn
- Department of Trauma and Orthopaedic Surgery, Tallaght University Hospital, Dublin, Ireland
| | - James M Broderick
- Department of Trauma and Orthopaedic Surgery, Tallaght University Hospital, Dublin, Ireland
| | - Muthana M Abdelhalim
- Department of Trauma and Orthopaedic Surgery, Tallaght University Hospital, Dublin, Ireland
| | - John F Quinlan
- Department of Trauma and Orthopaedic Surgery, Tallaght University Hospital, Dublin, Ireland
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Muscat DM, Lambert K, Shepherd H, McCaffery KJ, Zwi S, Liu N, Sud K, Saunders J, O'Lone E, Kim J, Robbins A, Webster AC. Supporting patients to be involved in decisions about their health and care: Development of a best practice health literacy App for Australian adults living with Chronic Kidney Disease. Health Promot J Austr 2020; 32 Suppl 1:115-127. [PMID: 32888215 DOI: 10.1002/hpja.416] [Citation(s) in RCA: 16] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/31/2020] [Accepted: 08/21/2020] [Indexed: 11/08/2022] Open
Abstract
ISSUE ADDRESSED Inadequate health literacy is common in those with chronic kidney disease (CKD), especially among culturally and linguistically diverse groups. Patient information for people with CKD, including those with kidney failure requiring dialysis, is often written beyond their literacy level, and many CKD-related apps are not accurate or evidence based. These represent important barriers to health care decision-making and equity in access to health care. METHODS We developed a cross-platform application (the "SUCCESS app") to support Australian adults with kidney failure requiring dialysis to actively participate in self-management and decision-making. App content was informed by health literacy theory which recognises the importance of reducing the complexity of health information as well as equipping consumers with the skills necessary to access, understand and act on this information. The development team comprised members of diverse backgrounds and expertise, including nursing, allied health, psychology, epidemiology, nephrology and IT, as well as consumer representatives. RESULTS Content areas included diet, fluids, medicine, physical activity, emotional well-being and supportive care, chosen as they represent important decision points in the CKD trajectory. To support functional health literacy, a four-step process to simplify written content was used including calculating readability statistics, applying the Patient Education Materials Assessment Tool, supplementing written information with video and audio content, and incorporating micro-learning and interactive quizzes. To develop communicative and critical health literacy skills, question prompt lists and evidence-based volitional help sheets were included in each module to support question-asking and behaviour change. We also developed animated skills training related to communication, shared decision-making and critical appraisal of health information. CONCLUSIONS This is the first health literacy informed app developed to promote active patient participation in CKD management and decision-making. Ongoing evaluation of the SUCCESS app through analysis of quantitative and qualitative data will provide valuable insights into the feasibility of implementing the app with dialysis patients, and the impact of the intervention of psychosocial and clinical outcomes. SO WHAT?: Digital health solutions have been found to improve self-management for chronic conditions, and could optimise the use of health care services and patient outcomes.
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Affiliation(s)
- Danielle Marie Muscat
- Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Kelly Lambert
- Discipline of Nutrition and Dietetics, Faculty of Science, Medicine and Health, School of Medicine, University of Wollongong, Wollongong, Australia
| | - Heather Shepherd
- School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia
| | - Kirsten J McCaffery
- Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Stephanie Zwi
- Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Na Liu
- School of Computer Science, Faculty of Engineering and IT, The University of Sydney, Sydney, Australia
| | - Kamal Sud
- Nepean Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.,Department of Renal Medicine, Nepean Hospital, Nepean Blue Mountains Local Health District, Sydney, Australia
| | - John Saunders
- Department of Renal Medicine, Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, Australia
| | - Emma O'Lone
- Department of Renal Medicine, Royal North Shore Hospital, Northern Sydney Local Health District, Sydney, Australia
| | - Jinman Kim
- School of Computer Science, Faculty of Engineering and IT, The University of Sydney, Sydney, Australia.,Telehealth and Technology Center, Nepean Hospital, Nepean Blue Mountains Local Health District, Sydney, Australia
| | | | - Angela C Webster
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
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Kaundinya T, Mazumder N, Atiemo K, Spellman A, Daud A, Curtis LM, Ladner DP. Health Literacy Gaps in Online Resources for Cirrhotic Patients. ACTA ACUST UNITED AC 2020; 10:1-6. [PMID: 32879644 DOI: 10.14740/jcs401] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/26/2022]
Abstract
Background The average readability level in the USA is a sixth grade level and for patients with chronic disease it is lower. Cirrhosis is a prevalent chronic disease that requires complex knowledge and instructions to manage. No research has been done about the understandability of online educational content for cirrhotic patients. Patients can find online materials curated by both general health platforms and high-volume liver transplant centers, and thus these materials were analyzed. Methods After determining exclusion criteria, the websites of the top 20 general health platform results and the websites of the top 20 high-volume hepatology centers were analyzed. Readability was assessed using the Patient Education Materials Assessment Tool (Audiovisual Materials) (PEMAT-A/V), Flesch-Kincaid Grade Level tests, word counts, sentence counts, words per sentence, and time for an average sixth grader to read. Results The mean grade level readabilities were 12.3 and 11.3 for the general resources and the transplant center resources, respectively. The online resources ranged from 9 to 389 sentences requiring an average of 9.8 min to read. The mean PEMAT-A/V scores were 70.05% for the general resources and 72.45% for the transplant center resources. There was a statistically significant difference in the Flesch-Kincaid grade level, sentence number, words per sentence, word count, and time for an average sixth grader to read the general resources and transplant center resources (P < 0.05). Conclusions The online resources both from health platforms and hepatology centers available to patients with cirrhosis are too long and complex and underscore the need for simpler and shorter resources.
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Affiliation(s)
- Trisha Kaundinya
- Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA
| | - Nikhilesh Mazumder
- Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.,Division of Gastroenterology, Northwestern Medicine, Chicago, IL, USA
| | - Kofi Atiemo
- Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.,Division of Transplant, Department of Surgery, Tulane University, New Orleans, LA, USA
| | - Ari Spellman
- Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.,University of Michigan Medical School, Ann Arbor, MI, USA
| | - Amna Daud
- Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA
| | - Laura Marie Curtis
- Health Literacy and Learning Program (HeLP), Division of General Internal Medicine and Geriatrics, Feinberg School of Medicine, Chicago, IL, USA
| | - Daniela Patricia Ladner
- Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.,Division of Transplantation, Northwestern Medicine, Chicago, IL, USA
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Tong A, Levey AS, Eckardt KU, Anumudu S, Arce CM, Baumgart A, Dunn L, Gutman T, Harris T, Lightstone L, Scholes-Robertson N, Shen JI, Wheeler DC, White DM, Wilkie M, Craig JC, Jadoul M, Winkelmayer WC. Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health. Clin J Am Soc Nephrol 2020; 15:937-948. [PMID: 32586923 PMCID: PMC7341768 DOI: 10.2215/cjn.00900120] [Citation(s) in RCA: 38] [Impact Index Per Article: 7.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/21/2020] [Accepted: 04/16/2020] [Indexed: 12/24/2022]
Abstract
BACKGROUND AND OBJECTIVES The language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Patients with CKD (n=54) and caregivers (n=13) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis. RESULTS We identified four themes: provoking and exacerbating undue trauma (fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); frustrated by ambiguity (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, correlating with symptoms and effect on life, predicting progression, and need for intervention); and mobilizing self-management (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others). CONCLUSIONS The obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes.
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Affiliation(s)
- Allison Tong
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia .,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Andrew S Levey
- Division of Nephrology, Tufts Medical Center, Boston, Massachusetts
| | - Kai-Uwe Eckardt
- Medical Department, Division of Nephrology and Internal Intensive Care Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany
| | - Samaya Anumudu
- Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas
| | | | - Amanda Baumgart
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Louese Dunn
- Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| | - Talia Gutman
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Tess Harris
- Polycystic Kidney Disease International, London, UK
| | - Liz Lightstone
- Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, UK
| | - Nicole Scholes-Robertson
- Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Jenny I Shen
- Division of Nephrology and Hypertension, Harbor-UCLA Medical Center, Torrance, California
| | - David C Wheeler
- Centre for Nephrology, University College London, London, UK.,George Institute for Global Health, Sydney, New South Wales, Australia
| | - David M White
- Center for Health Action and Policy, The Rogosin Institute, New York, New York
| | - Martin Wilkie
- Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
| | - Jonathan C Craig
- College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia
| | - Michel Jadoul
- Department of Nephrology, Cliniques Universitaires Saint-Luc, Université Catholique de Louvain, Brussels, Belgium
| | - Wolfgang C Winkelmayer
- Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, Texas
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Bonnal H, Bechade C, Boyer A, Lobbedez T, Guillouët S, Verger C, Ficheux M, Lanot A. Effects of educational practices on the peritonitis risk in peritoneal dialysis: a retrospective cohort study with data from the French peritoneal Dialysis registry (RDPLF). BMC Nephrol 2020; 21:205. [PMID: 32471380 PMCID: PMC7260816 DOI: 10.1186/s12882-020-01867-w] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/12/2020] [Accepted: 05/25/2020] [Indexed: 12/02/2022] Open
Abstract
Background Peritoneal dialysis (PD) is a home-based therapy performed by patients or their relatives in numerous cases, and the role of patients’ educational practices in the risk of peritonitis is not well assessed. Our aim was to evaluate the effect of PD learning methods on the risk of peritonitis. Methods This was a retrospective multicentric study based on data from a French registry. All incident adults assisted by family or autonomous for PD exchanges in France between 2012 and 2015 were included. The event of interest was the occurrence of peritonitis. Cox and hurdle regression models were used for statistical analysis to asses for the survival free of peritonitis, and the risk of first and subsequent peritonitis. Results 1035 patients were included. 967 (93%) received education from a specialized nurse. Written support was used for the PD learning in 907 (87%) patients, audio support in 221 (21%) patients, and an evaluation grid was used to assess the comprehension in 625 (60%) patients. In the “zero” part of the hurdle model, the use of a written support and starting PD learning with hands-on training alone were associated with a lower survival free of peritonitis (respectively HR 1.59, 95%CI 1.01–2.5 and HR 1.94, 95%CI 1.08–3.49), whereas in the “count” part, the use of an audio support and starting of PD learning with hands-on training in combination with theory were associated with a lower risk of presenting further episodes of peritonitis after a first episode (respectively HR 0.55, 95%CI 0.31–0.98 and HR 0.57, 95%CI 0.33–0.96). Conclusions The various PD education modalities were associated with differences in the risk of peritonitis. Prospective randomized trials are necessary to confirm causal effect. Caregivers should assess the patient’s preferred learning style and their literacy level and adjust the PD learning method to each individual.
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Affiliation(s)
- Hélène Bonnal
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France.,U1086 INSERM - ANTICIPE - Centre Régional de Lutte Contre le Cancer François Baclesse, Caen, France
| | - Clémence Bechade
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France.,U1086 INSERM - ANTICIPE - Centre Régional de Lutte Contre le Cancer François Baclesse, Caen, France
| | - Annabel Boyer
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France.,U1086 INSERM - ANTICIPE - Centre Régional de Lutte Contre le Cancer François Baclesse, Caen, France
| | - Thierry Lobbedez
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France.,RDPLF, 30 Rue Sere Depoin, 95 300, Pontoise, France
| | - Sonia Guillouët
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France
| | | | - Maxence Ficheux
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France
| | - Antoine Lanot
- Normandie Univ, UNICAEN, CUMR, CHU de Caen Normandie, Néphrologie, Avenue de la cote de nacre, 14033, Caen-Cedex, France. .,U1086 INSERM - ANTICIPE - Centre Régional de Lutte Contre le Cancer François Baclesse, Caen, France.
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Bowman C, Lunyera J, Alkon A, Boulware LE, St Clair Russell J, Riley J, Fink JC, Diamantidis C. A Patient Safety Educational Tool for Patients With Chronic Kidney Disease: Development and Usability Study. JMIR Form Res 2020; 4:e16137. [PMID: 32463366 PMCID: PMC7290458 DOI: 10.2196/16137] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/04/2019] [Revised: 02/04/2020] [Accepted: 03/23/2020] [Indexed: 12/22/2022] Open
Abstract
Background Chronic kidney disease (CKD) is a health condition that threatens patient safety; however, few interventions provide patient-centered education about kidney-specific safety hazards. Objective We sought to develop and test the usability of a mobile tablet–based educational tool designed to promote patient awareness of relevant safety topics in CKD. Methods We used plain language principles to develop content for the educational tool, targeting four patient-actionable safety objectives that are relevant for individuals with CKD. These four objectives included avoidance of nonsteroidal anti-inflammatory drugs (NSAIDs); hypoglycemia awareness (among individuals with diabetes); temporary cessation of certain medications during acute volume depletion to prevent acute kidney injury (ie, “sick day protocol”); and contrast dye risk awareness. Our teaching strategies optimized human-computer interaction and content retention using audio, animation, and clinical vignettes to reinforce themes. For example, using a vignette of a patient with CKD with pain and pictures of common NSAIDs, participants were asked “Which of the following pain medicines are safe for Mr. Smith to take for his belly pain?” Assessment methods consisted of preknowledge and postknowledge surveys, with provision of correct responses and explanations. Usability testing of the tablet-based tool was performed among 12 patients with any stage of CKD, and program tasks were rated upon completion as no error, noncritical error (self-corrected), or critical error (needing assistance). Results The 12 participants in this usability study were predominantly 65 years of age or older (n=7, 58%) and female (n=7, 58%); all participants owned a mobile device and used it daily. Among the 725 total tasks that the participants completed, there were 31 noncritical errors (4.3%) and 15 critical errors (2.1%); 1 participant accounted for 30 of the total errors. Of the 12 participants, 10 (83%) easily completed 90% or more of their tasks. Most participants rated the use of the tablet as very easy (n=7, 58%), the activity length as “just right” (rather than too long or too short) (n=10, 83%), and the use of clinical vignettes as helpful (n=10, 83%); all participants stated that they would recommend this activity to others. The median rating of the activity was 8 on a scale of 1 to 10 (where 10 is best). We incorporated all participant recommendations into the final version of the educational tool. Conclusions A tablet-based patient safety educational tool is acceptable and usable by individuals with CKD. Future studies leveraging iterations of this educational tool will explore its impact on health outcomes in this high-risk population.
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Affiliation(s)
- Cassandra Bowman
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States
| | - Joseph Lunyera
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States
| | - Aviel Alkon
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States
| | - L Ebony Boulware
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States
| | - Jennifer St Clair Russell
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States.,The National Kidney Foundation, Washington, DC, United States
| | - Jennie Riley
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States
| | - Jeffrey C Fink
- Division of General Internal Medicine, University of Maryland School of Medicine, Baltimore, MD, United States
| | - Clarissa Diamantidis
- Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, United States.,Division of Nephrology, Duke University School of Medicine, Durham, NC, United States.,Duke Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, United States
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Cervi A, Diamantouros A, Azzam M, Lane SJ, Sapru H, Verhovsek M. Pharmacy hydroxyurea education materials for patients with sickle cell disease: An environmental scan and assessment of accuracy. Pediatr Blood Cancer 2020; 67:e28179. [PMID: 31965703 DOI: 10.1002/pbc.28179] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/21/2019] [Revised: 12/02/2019] [Accepted: 12/18/2019] [Indexed: 01/13/2023]
Abstract
BACKGROUND Hydroxyurea (HU) remains a cornerstone of sickle cell disease (SCD) therapy; however, its use is limited by poor patient adherence owing to concerns about side effects. Pharmacies routinely provide patients with handouts about HU, which, we hypothesized, contain inaccuracies that may contribute to negative patient perceptions of HU. METHODS We used a systematic approach to collect and review patient information handouts (PIHs) on HU from pharmacies in Ontario, Canada. PIHs were evaluated according to: i. Number of inaccurate statements, ii. Percentage of essential statements based on comparison with a reference standard PIH developed by the Canadian Haemoglobinopathy Association (CanHaem), and iii. Reading level. RESULTS PIHs were collected from 98% of chain and community pharmacies registered in Ontario. All PIHs contained inaccurate statements, most frequently relating to the risk of developing cancer. Only 33% of PIHs identified SCD as an indication for HU use. Pharmacy PIHs contained 45% of the essential statements present within the CanHaem HU PIH, neglecting to mention use of HU for management of SCD and benefits of HU in preventing SCD complications. Moreover, the reading level across pharmacy PIHs was 1.8 grades higher than that advised for written patient education materials. CONCLUSION Patients who are prescribed HU are likely to be provided with PIHs that contain inaccuracies that are weighted toward the risks of HU therapy and run contrary to published literature. This study identifies a gap in the care of patients with SCD and an opportunity to improve the quality of HU PIHs to help patients make well-informed decisions about their health.
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Affiliation(s)
- Andrea Cervi
- Department of Medicine, McMaster University, Hamilton, Ontario, Canada
| | | | - Mona Azzam
- Pediatrics Department, Suez Canal University, Ismailia, Egypt
| | - Shannon J Lane
- McMaster Centre for Transfusion Research, McMaster University, Hamilton, Ontario, Canada
| | - Hyra Sapru
- Department of Medicine, Western University, London, Ontario, Canada
| | - Madeleine Verhovsek
- Department of Medicine, McMaster University, Hamilton, Ontario, Canada.,Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada
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Winterbottom AE, Mooney A, Russon L, Hipkiss V, Williams R, Ziegler L, Bekker HL. Critical review of leaflets about conservative management used in uk renal services. J Ren Care 2020; 46:250-257. [PMID: 32270601 DOI: 10.1111/jorc.12327] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/19/2019] [Revised: 02/07/2020] [Accepted: 02/08/2020] [Indexed: 10/24/2022]
Abstract
BACKGROUND Written information supplements nurse-led education about treatment options. It is unclear if this information enhances patients' reasoning about conservative management (CM) and renal replacement therapy decisions. AIM This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Established Kidney Disease (EKD) during usual pre-dialysis education. DESIGN A survey using mixed methods identified and critically analysed leaflets about CM. PARTICIPANTS & MEASUREMENTS All 72 renal units in the United Kingdom received an 11-item questionnaire to elicit how CM education is delivered, satisfaction and/or needs with patient resources and staff training. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS Fifty-four (75%) units participated. Patients discuss CM with a nephrologist (98%) or nurse (100%). Eighteen leaflets were reviewed, mean scores were 8.44 out of 12 (range 5-12, SD = 2.49) for information presentation; 3.50 out of 6 (range 0-6, SD = 1.58) for inclusion of information known to support shared decision-making and 2.28 out of 6 (range 1-4, SD = 0.96) for presenting non-biased information. CONCLUSIONS Nurses preferred communicating via face-to-face contact with patients and/or families because of the emotional consequences and complexity of planning treatment for the next stage of a person's worsening kidney disease. Conversations were supplemented with written information; 66% of which were produced locally. Staff perceived a need for using leaflets, and spend time and resources developing them to support their services. However, no leaflets included the components needed to help people reason about conservative care and renal replacement therapy options during EKD education consultations.
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Affiliation(s)
- Anna E Winterbottom
- Adult Renal Services, Lincoln Wing, St. James University Hospital, Beckett Street, Leeds, LS9 7TF, UK
| | - Andrew Mooney
- Adult Renal Services, Lincoln Wing, St. James University Hospital, Beckett Street, Leeds, LS9 7TF, UK
| | - Lynne Russon
- Sue Ryder Care, Wheatfields Hospice, Grove Road, Headingley, Leeds, LS6 2AE, UK
| | - Vicki Hipkiss
- Bradford Renal Unit, Horton Wing, St. Luke's Hospital, 1st Floor, Little Horton Lane, West Yorkshire, BD5 0NA, UK
| | - Richard Williams
- Adult Renal Services, Lincoln Wing, St. James University Hospital, Beckett Street, Leeds, LS9 7TF, UK
| | - Lucy Ziegler
- Academic Unit of Palliative Care, Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Worsley Building-Level 10, Clarendon Way, Leeds, LS2 9NL, UK
| | - Hilary L Bekker
- Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Worsley Building-Level 10, Clarendon Way, Leeds, LS2 9NL, UK
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Asiedu GB, Finney Rutten LJ, Agunwamba A, Bielinski SJ, St. Sauver JL, Olson JE, Rohrer Vitek CR. An assessment of patient perspectives on pharmacogenomics educational materials. Pharmacogenomics 2020; 21:347-358. [PMID: 32292118 PMCID: PMC7197106 DOI: 10.2217/pgs-2019-0175] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2019] [Accepted: 01/27/2020] [Indexed: 01/02/2023] Open
Abstract
Aim: Pharmacogenomics (PGx) holds potential to improve patient treatment; yet, effective patient educational materials are limited. Materials & methods: Using a 'think aloud' technique, we sought to understand comprehension and perceptions of a multimedia PGx results packet including a cover letter with QR code to an educational video, brochure and prototype report in the context of PGx case vignettes. Results: The cover letter and video components were viewed less favorably due to excess detail, complex jargon and technology challenges. Recommendations were to enhance comprehension and utility and to customize materials to each patient's medications or disease conditions. Conclusion: Educational materials were revised to improve comprehension and usability, and diminish concerns to better prepare patients to understand the importance of discussing test results with their provider.
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Affiliation(s)
- Gladys B Asiedu
- Robert D. & Patricia E. Kern Center for The Science of Health Care Delivery, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA
| | - Lila J Finney Rutten
- Robert D. & Patricia E. Kern Center for The Science of Health Care Delivery, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA
- Department of Health Sciences Research, Mayo Clinic, 200 First St. SW, Rochester, MN 55905, USA
| | - Amenah Agunwamba
- Robert D. & Patricia E. Kern Center for The Science of Health Care Delivery, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA
| | - Suzette J Bielinski
- Department of Health Sciences Research, Mayo Clinic, 200 First St. SW, Rochester, MN 55905, USA
| | - Jennifer L St. Sauver
- Robert D. & Patricia E. Kern Center for The Science of Health Care Delivery, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA
- Department of Health Sciences Research, Mayo Clinic, 200 First St. SW, Rochester, MN 55905, USA
| | - Janet E Olson
- Department of Health Sciences Research, Mayo Clinic, 200 First St. SW, Rochester, MN 55905, USA
| | - Carolyn R Rohrer Vitek
- Center for Individualized Medicine, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA
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50
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Paixão MM, Ballouz T, Lindahl JF. Effect of Education on Improving Knowledge and Behavior for Arboviral Diseases: A Systematic Review and Meta-Analysis. Am J Trop Med Hyg 2020; 101:441-447. [PMID: 31115297 DOI: 10.4269/ajtmh.19-0170] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/07/2022] Open
Abstract
Arboviral diseases are responsible for a high burden of disease in humans, and a significant part of disease risk reduction efforts relies on vector control methods. The elimination of potential breeding sites for the mosquito vectors and a higher level of literacy by the populations at risk could present a sustainable and environmentally friendly solution. This review aims to assess the efficacy of educational interventions for arboviral diseases on knowledge and self-reported behavior. A systematic literature search was performed using Cochrane, EMBASE, Global Health, and PubMed. References of articles retrieved were searched manually for further studies. Critical appraisal of the selected articles was performed using the Effective Public Health Practice Project tool, and studies with a control group were further assessed through the Cochrane's risk of bias tool. A summary narrative of the results and a meta-analysis was conducted. Fourteen studies fulfilling the inclusion criteria were analyzed. Overall, there was an increase in knowledge and in self-reported adoption of protective measures. No effect was found using solely printed material. A meta-analysis was performed separately for the two outcomes measured, which produced a mean standardized difference of 1.86 (95% CI: 1.33-2.39) in knowledge scores compared with the control groups. Regarding the self-reported protective behavior, the results show a summary value of odds ratio of 5.23 (95% CI: 3.09-7.36). Most of the educational interventions had a positive impact on knowledge and self-reported adoption of protective measures. More research producing stronger evidence and evaluating long-term impact is needed.
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Affiliation(s)
- Maria Margarida Paixão
- Department of Public Health of Amadora, Lisbon, Portugal.,London School of Hygiene & Tropical Medicine, London, United Kingdom
| | - Tala Ballouz
- London School of Hygiene & Tropical Medicine, London, United Kingdom
| | - Johanna F Lindahl
- Department of Clinical Sciences, Swedish University of Agricultural Sciences, Uppsala, Sweden.,International Livestock Research Institute, Ha Noi, Vietnam.,Department of Medical Biochemistry and Microbiology, Uppsala University, Uppsala, Sweden
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